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

Yesterday on a hike with a friend, I had poor aim on a potty stop and ended up with a wet hiking boot and pants leg. On the one hand, this bothered me because I consider myself an intrepid outdoors woman. I have hiked hundreds of miles, camped in the back country for days on end, and have become (or so I thought) a pretty accomplished wilderness pee-er. On the other hand, I wasn’t embarrassed, since I was with Amy, my oldest and dearest friend in the world. “Oh, look,” I said, after emerging slightly sodden from the bushes, “I seem to have had a problem.” She laughed once, promised to keep it a secret between the two of us (I do have a reputation, you know), and then told my husband about my faux pas about 2.3 seconds after he came home from work.

I’m sure you gentle readers are wondering why I am waxing on about urinating in the woods. Good question. The story here isn’t about bodily functions, but rather about friends. There are many classes of friends. There are men and women I meet for lunch and we talk about writing and other serious topics, but we never venture into the choppier waters of our interior lives; there are other folks who understand my fears and my dreams, but who simply haven’t known me long enough to understand me intimately; then there’s Jay, who I consider my best friend, but he is also my husband and partner, so sometimes I have to be strong with him and for him; I am also blessed to have a family whose members are often more like friends than siblings. None of these relationships is like the one I have with Amy, though.

I met Amy in college in California when I was nineteen years old. “You are just a baby,” she said, sitting behind me in Western Civilization I, sage and aged in her twenties. We ended up together in Western Civilization II, where I think we were the two best pupils in the class. We studied together and shared notes, but there was a definite competitive edge there too. I don’t remember who ended up being the top scorer in the class.  (Well, I do – but I’m not telling.)
I’m not sure exactly what pushed us from the casual chatter of young women (“My hair is, like, so out of control today.”) to close friends. We certainly were never cookie cutter versions of one another. She has always thrived on stability and continuity, while I have looked for change and chaos. She has lived in the same house almost her entire life; since I met her, I have lived in twelve different homes across the world. She likes nothing better than riding her horse on a trail; in the lexicon of western recreational land use, I should be her nemesis, since I prefer to hike and mountain bike. I am married and have a child, while she is single. Before I was married, I jumped from relationship to relationship, which is not Amy’s style at all. Her hair is always short; mine long. She has cultivated a garden like something out of House Beautiful, while I live surrounded by weeds and empty flower beds.

I’m probably overly-exaggerating our differences because while we differ in the outward appearances of our lives, we share a world view and a temperament that make us spiritual sisters. We’re both intensely loyal. We’ve pissed each other off more times than we can count in nineteen years, but we’re both forgiving of the people we love. We’re both anal and fastidious in our own ways. We’re both sarcastic, as well as fairly attuned to our interior landscapes, which means we can make fun of ourselves. We love to travel together and experience new places at each other’s side. We even hike the same way – full bore ahead, not too much stopping to check out the landscape and catch our breath. We love animals and treat the pets who have graced our lives more like royalty than the fur-brains they are. We like to tease each other. Her laughing about my pee-soaked foot, or my laughing at her pea-sized bladder (Really, you could not imagine someone needing to stop and relieve themselves as often on a car trip as Amy does; it’s like every four feet down the interstate, we need to find a gas station) is a form of affection, a way of saying, “I know your strengths and your flaws. You don’t need to be perfect with me. If you try and pretend to be perfect, I will know you are bullshitting me. So laugh with me about yourself.”

We have definitely seen each other at our worst. I have puked my guts up after nights of drinking while Amy has watched; I have called her in hysterics, so sad and crazy about something that I couldn’t breathe. I tried to be by her side when her closest friend died of the flu when she was only 22. We’ve shepherded each other through bad relationships, stupid career choices, and miserable years. Most importantly, we’ve seen each other through the dark times and have emerged out the other side, into bright sunlight, still friends. She was by my side when I married Jay; she came to the hospital the day I had Andrew.

Neither of our lives are idyllic right now. I have sarcoidosis and a heart problem; she sometimes feels a little stuck in her life in California. But we’ve learned from each other (and perhaps from the intervening years) that although life does not have to be perfect, you still have to show up for it. We’ve also helped each other see the small blessings that surround us every day: a saucy tabby cat in each of our households, good television shows to distract us (Amy is my arbiter of taste in all things video), an e-mail to cheer us up. I would not count our friendship in this category of everyday goodness. Rather it is extraordinary and sustaining.

Amy spent nearly three months last summer with us in Montana. Although she says that she needed the time to reevaluate her life and that she wanted a break from her job in California, I suspect that the reason she took such a long leave of absence from work was so that she could come help her sick, chronically fatigued friend. That’s the sign of true friendship, I think, when someone doesn’t make a big deal out of saving your life. They just do it.

She only has a week to spend with us this year, but it’s amazing to me how quickly we settle into each other’s company. I never feel the awkward strain of distance or time passed. I only see my friend, who has helped me progress from girl to woman, who has watched me become a wife and a mother, who has loved my son and my husband, who has sat with me while I’m sick, who has listened to my fears about dying and leaving behind a young child, who has taught me that Buffy the Vampire Slayer truly was the best show ever on television, who has never turned her back on me, who has laughed at me when I pee down my leg. Who has always, in every way, been a friend.

I don’t enjoy being sick, but sarcoidosis has taught me a few things. One of them is I’m not alone and that I am damn lucky to be surrounded by the people I love. Even if they can’t be quiet about a little urinary misdirection on the trail.

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August 25, 2006 at 3:06 pm (Uncategorized)

Today is my birthday. Although the day marks the sad and definitive arrival of my mid (instead of my late early) thirties, I’ve had a wonderful day.

Sometime after your twenty-first birthday, the concept of celebrating the passage of another year begins to lose some of its cachet. You can vote; you can die for your country; and, most importantly, you can, at long last, legally drink. What else is there to mark after gaining the right to booze with impunity? There’s a slowing metabolism, a burgeoning gut, gray hairs, and creakier knees. No wonder my birthdays have become a little more low-keyed every year.

However, this year feels special. Andrew is old enough to appreciate the magic power of birthdays even when they’re not his own. For instance, he’s really into the whole cake concept. Jay’s birthday was earlier this week (and, I must announce, at one year older than me, he has officially entered his early late thirties, instead of my youthful mid-thirties), and Andrew chose the type of cake we would bake him, the color of the frosting, and helped me decorate it. Decorating it meant plunging his hand up to the wrist in the frosting bowl and shoving as much into his mouth as he could before I grabbed his hand and wrung some frosting back into the bowl. Then he poured half a pound of colored sugar on top and began to have a nervous breakdown because we needed to wait for Daddy to be present to eat Daddy’s cake. “Let’s just have a little lick right now,” he told me many times as I began to prepare dinner. Last night, I was sent downstairs while Jay and Andrew prepared my cake. I was relieved to hear the same sounds of an ongoing and ferocious struggle that had involved my cake-baking with my son. “No, Andrew. Give me the sugar… No, pour sugar into the bowl. No, hands not in the sugar bowl. DON’T EAT THE RAW EGG.” And so forth, ending with a sustained and high-pitched squeal from the smaller of my two boys.

Andrew has also begun to understand the concept of birthdays being days to do fun, out of the ordinary, things. So, we made extra sugary pancakes this morning. (Yet another round of, “DON’T EAT THE RAW EGG!”), visited a new park, and met Jay for lunch at Andrew’s favorite restaurant–a hot dog place with a merry-go-round in the back. It being a special day and all, Andrew got french fries with his hot dog. We then played with the elaborate Thomas the Tank Engine train set at the toy store before we headed home for story time and nap time. It was the perfect day for me.

Birthdays used to be about significant events – the turning over of decades, the gaining of new rights, the thrill of drinking until the room spun. Now I can think of nothing more meaningful than sharing a hot dog with my son and possibly giving him salmonella by baking with him. I find myself, finally, appreciating the smaller things in life. Perhaps this is simply part of the whole getting older and wiser (and fatter) equation, or perhaps it’s because I can witness the glee in my son’s eye in sharing a day with his mother, or perhaps it’s because having a chronic illness has made me realize I can’t take time for granted. Whatever the reason, I am thankful to be a year older, thankful to have such an amazing husband and son, thankful for my extended family and friends. Most of all, I am thankful for cake. Lots and lots of cake. Maybe I’ll have just one tiny little lick before dinner.

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Looking Backwards

August 24, 2006 at 10:13 am (Uncategorized)

When I was fifteen years old, I fell madly in love with an older cyclist – I’ll call him Craig Bowdoin – who helped me with training plans and racing techniques. Since he was nearly twice my age, and he was a sensible and kind man, my love went unmentioned and unrequited. Instead of a glamorous older boyfriend, I got a family friend who kept an extra, protective eye on me during long training rides.

Part of Craig’s allure was his tragic past. I was fifteen, my favorite author was Sylvia Plath, and I wrote long, dark poems; so it’s not surprising that I was drawn to Craig. A couple of years before I met him, his twenty-something wife had died from cancer. She was diagnosed when they were still dating, but Craig had married her even when it became clear that she was going to die (and he would legally assume her thousands of dollars of unpaid medical bills.)

Craig was, quite understandably, pretty bitter about the abrupt turn his life had taken. He didn’t talk about his wife much, but when he did, he always replayed one scene for me. When she was close to death, she had asked for a priest and had made a final confession and received last rites. This infuriated Craig. She had broken from the Church when she was younger, and Craig felt that by returning to its embrace in her last moments, she was dying a hypocrite.

His fury didn’t make a whole lot of sense to my fifteen year old brain. Why be so angry at a priest who had done his duty and shuffled into a hospital room thick with the smell of death? Why not instead be angry at his wife’s cancer? Or the forces of fate that conspired to kill a young woman, or the doctors who couldn’t save her, or the hospital administrators that mired him in life-long debt? Why not be angry at God?

Now that I’m older and I’ve had my own run-ins with mortality and the seemingly unfair order of the universe, I can understand his rage much better. He was angry at his wife and the religion she had turned to in her final moments precisely because he could be. It’s tough to stay mad at a disease. Sickness is, after all, simply too big and too slippery to make an easy target for rage. It’s much more logical to focus on the people involved. This is why I can often forgive my disease, but cannot imagine letting go of my anger at some of the doctors who have wronged me. Sarcoidosis shows me a blank face, but I can all too easily picture the smirk of the electrophysiologist who shrugged off my fears and concerns and sauntered out of the exam room.

However, I can also see Craig’s wife’s perspective with a little more clarity too. Leaving aside questions of salvation and damnation – matters on which I have no authority or insight – why wouldn’t she return to the faith that was familiar to her? When I stand between the great yawing mouth of uncertainty that is death, I imagine I too will want the comfort of the known, the prayers of my childhood. I will want some kind of ritual to mark my passage. Wouldn’t you? I don’t think his wife was being hypocritical. I think she was grasping for traction. And returning to where we’ve been (and who we’ve been) is a way to do this.

I’ve noticed my own backward-looking glance in the past couple of years since I’ve gotten sarcoidosis. I wonder about grade school friends. What ever happened to Nicole Miller, my best friend from second and third grade in Texas? I wonder about Patsy Black, who I thought was my closest friend in the whole world for ten years, until one day, when I was twenty-four, I realized I had nothing in common with her anymore and I stopped writing to her and calling her and we vanished from each other into the ether. I wonder about Craig Bowdoin and Pam Freshney, my AP English teacher who made me want to be a writer. I wonder about Greg Karahalis, the first guy I ever kissed.

Why all this wondering? I catch myself getting as frustrated with myself as Craig did with his wife. Do I expect these people to hold some truth about me? Do I think that their sense of me will provide some traction? Logically, I know they don’t and they can’t, but the reptilian part of my brain wants someone to say, “This is who you are. You are the girl who wrote poems about lost love before you had ever known love. You are the girl who skipped classes to go write in a cemetery and then go to a Louisiana bakery and eat Mardi Gras King Cake and talk about the future. You are the girl who was afraid of being kissed. You are the girl who loved second grade so much that when you threw up in the bathroom, you didn’t tell the teachers because you didn’t want to get sent home and miss reading.” The void feels too close, and I want definitive answers. But the answers that Nicole and Patsy and Greg hold are dated. They are like old news clippings, heralding the importance of events that ended up not being essential at all.

Sometimes the keepers of our selves in the past are wrong, and we want to return to them to correct the images they hold. When I was a young woman, I saw a highly respected psychologist who shall go unnamed. I had recently undergone some extremely traumatic events which will also go unnamed, and I was sent to this shrink to help me make sense of everything. Unfortunately, this guy got everything wrong and ended up making me more traumatized and crazy than when I started. Sessions with this him were like looking in a fun-house mirror. I’d go in with one sense of myself and come out feeling damaged and broken. My time with him culminated with him telling me I’d never be able to make it on my own.

I’ve often thought about writing him and telling him how utterly wrong he was about me, my life, and my future – not in a mean or vindictive way, but rather to reclaim what sometimes feels like lost years. I looked him up on the Web the other day, and found out he died a couple of years ago from heart disease at the age of 54. I felt this immense sadness well up inside me. I could never make right this warped image of me. I could never reclaim this bit of my broken past. I could never say, “You were wrong. Look at how strong and sane and whole I have become.”

But then I caught myself and realized I was being just like Craig – looking for targets, looking for answers to riddles that never really existed. We hold our own pasts, string together a coherent narrative of self out of the disparate events that seem all too random. I know who I was, who I am. Who cares about the shrink? He’s simply an easy mark, a handy repository for all my rage from that time. At least, that’s what I tell myself.

I wonder about Craig. The last time I spoke with him, he had remarried and his new wife was expecting their first child. He should be happy. He deserves that.

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Wheels of Kindness

August 21, 2006 at 11:33 am (Uncategorized)

My big brother and his family just gave us a car. This was not a car along the lines of a 1979 Mazda with one door hanging off its hinge, bald tires, and enough rust to look like art. No, this was a recent vintage Volkswagen Passat. Red and shiny with plenty of zip.

We needed a car because Jay’s Honda Civic was totaled in a bad wreck in January. We could have survived with one car, but with a Montana winter fast approaching, I was anticipating having to shuttle Jay back and forth from work.

All my brother said was, “I want you to look back on this year and think that at least one good thing happened.” We hope to repay him in some fashion for the car, but I don’t think I’ll ever be able to reciprocate what he did to my heart with that one line.

I felt like bawling for most of the week we spent with my brother after he told us his plans with the car. Sometimes the overwhelming kindness and generosity of my family takes my breath away, especially when I read on sarcoidosis sites about other people who have to fight against their loved ones as well as their disease.

Sometimes I forget that I am not walking this road alone. Sometimes I forget the hands pulling me along. Sometimes I forget how lucky I am to be surrounded with the people in my life.

Now, if you’ll excuse me, I have to go cry again…and then go for a drive.

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You Mean, You Don’t Like Spending a Week in Bed?

August 17, 2006 at 11:10 am (Uncategorized)

We recently had a weird turn of events. Jay and I were both sick, and he got a nastier version of the illness than I did. It almost made me feel like I was slacking.

I’ll spare you the details of our family’s bout with the stomach flu. The broad brushstrokes of the week of fun, though, involved Jay, laying flat on his back, groaning every few minutes, refusing to eat or drink, and spending a whole lot of time in the bathroom. I, on the other hand, was only flat on my back for a couple of days, did much less groaning, and was able to wander a good twenty feet from the toilet.

At first I didn’t know what to make of this strange reversal. I’m the one without much of an immune system, so what the heck was going on? My initial inclination was to chalk it up to Jay’s Y chromosome. Before I go any further, let me assure you that I truly do love the male half of our species, particularly the cute fellow who became my husband. But, as any woman can tell you, men are, for lack of any better word, wimps. The future of the human race would be pretty dark if it were up to men to labor and bear children. A paper cut lays most of them low. Head colds, flus, and other minor illnesses are typically met with much teeth-gnashing, laying-a-bed, complaining, and proclaiming, “I’m not sure I’m gonna make it. My fever’s up to 98.9. You’d better call the ambulance.”

Imagine my surprise, then, to realize that Jay truly was sicker than I was. It wasn’t just that he was griping more than me; his fever was actually higher, his symptoms worse, his trips to the bathroom more frequent. Oops.

In defense of my title as the “Woman Who Catches the Worst Version of Any Illness,” I must say that I was pretty darn sick, too. But here’s what was odd: I didn’t much mind being stuck in bed with a rumbling stomach and full body aches. It’s not that I was happy to be falling behind in my work, getting out of shape (yet again), and becoming exhausted by my toddler’s antics. It’s just that the whole process felt so familiar that it was hard to be grumpy about it. In the past months, I had been forced to spend three weeks in bed with pneumonia; two days after I was up and about, I got in a car accident, and was staring at the ceiling again as I recovered. The few weeks of relative routine and good health between the worst of the car crash injuries and the stomach flu were the anomaly.

Finally, it occurred to me what was going on as Jay tossed and turned next to me one evening. “I get it,” I told him. “When you’re sick it’s kind of like amateur night at the comedy club.” Gauging by the look he shot me, the analogy wasn’t as clear to him as it was to me. “What I mean is,” I said, and then I went on to explain that I had become awfully good at being sick. The fevers and aches of a flu are pretty much common manifestations of sarcoidosis for me. Emergency rooms and hospitalizations aren’t that exciting anymore. I’m confident I could rig up my own IV, administer all the right physical exams, and order the proper lab tests. I’m thoroughly accustomed to catching everything that comes my way. In fact, I’m pleasantly surprised when I learn of a bug that I haven’t contracted (yet).

This normalization of illness is actually pretty depressing, especially when you consider that you can’t translate it into a marketable profession. People who have normalized working fourteen hours a day end up doing fairly well for themselves in business or law; dare devils who learn to channel their adrenaline rushes into professional mountain biking can carve out a career. Sickies, however, just get a slightly superior feeling when their loved ones are ill — and then have to berate themselves for that high and mighty feeling.

There are people, though, who cling to their status of Most Sick. In a world of winner-take-all, what else are they supposed to do when they’re hooked up to oxygen, confined to bed, and feeling lousy all day, every day? When I attended that sarcoidosis conference last year, I met some fellow patients who were truly extremely ill. But they didn’t seem all that bothered by it. In fact, I almost got the sense that they were a little proud of being the most sick of the very sick. I had a lot of conversations where people would catalogue every organ the sarcoidosis had invaded with a twinge of triumph. It was as if they had a successful – but abusive – spouse that they couldn’t quite let go of: “Well, he beats me, but he’s running for governor.”

Here’s the rub. I was doing the same kind of invalid one-upmanship with Jay. I didn’t say it, but I’m sure my entire being was conveying the message of, “Oh, you think you have it bad with your week-long diarrhea. Well, how do you think I feel with my heart condition and my lung condition and my horrible, awful autoimmune disease?” Once I sensed what I was doing, I tried to stop myself in my tracks. Good lord, I don’t want to be the world champion of sarcoidosis. I want to be a kick-ass athlete again, a Pulitzer Prize winning writer, a great mother. I don’t want Andrew to look back and think that all his mother could do was stay in bed stoically. Worse, when Drew gets the chicken pox or his tonsils out, I don’t want to stand by his bed and tell him how easy he’s got it compared to me.

When the people in my life talk about their illnesses, they always preface their remarks by saying, “I know this is nothing compared with what you have….” No. And no, no, no. It’s not nothing. Sickness is sickness. It sucks.  That said, my husband is still a lousy patient.

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Memory Lane

August 15, 2006 at 11:07 am (Uncategorized)

“Look! There’s Exempla,” Jay said, as we drove into Denver last week. “We made payments to them for over a year.” Oddly, there was almost a touch of fondness in his voice, as if we were passing old friends on I-25, not hospital chains that have threatened to send us to collection agencies.

I haven’t written for a while because Jay and I both got the stomach flu, and then, as soon as we were able to wander a few feet from a toilet, we headed off to Colorado to visit family. (By the outpouring of concerned e-mails in my absence from the blog, I have deduced that a total of three people, all related to me, read this site. Oh well….)

The drive from Montana to Denver is one we’ve done many times. For about a year and a half, I saw sarcoidosis specialists at National Jewish Hospital. I stopped making the pilgrimage to Denver when my favorite doctor left, handing me over to a colleague who, although I’m sure she was very competent, was also very German. Her authoritarian streak grated on me in ways too numerous to detail. Suffice it to say that she once told me not to bother trying to convey my emotional response to having a chronic illness to her. “I’ve been doing this so long,” she said, “that I know already what’s going on with you.” She also told me to keep my e-mails to her to three lines or less. “I don’t have time to read more than that,” she said. Ah, the humility of doctors.

Eventually Denver sent me to Mount Sinai in New York because they couldn’t figure out why my cardiac sarcoidosis symptoms showed improvement, but my heart kept enlarging and losing function. Or maybe they were just sick of receiving my verboten four-line e-mails. The doctors at Mount Sinai couldn’t shed any light on my burgeoning heart either, and I figured that as long as I was schlepping across the continent to get vague answers and perplexed head scratching, I might as well go see my favorite doctor who had left National Jewish and moved to Philadelphia.

Before I switched facilities, though, we trekked to Denver about every three months. The doctors wanted to monitor my response to medications quarterly, and apparently the MRI machines in Montana were not advanced enough to do the job.  I’ve subsequently realized that the question of where to get medical imaging done has less to do with the resolution of a particular machine and more to do with the territory marked out by a specific radiologist. I’ve come to believe that radiologists are some weird species rising from the mists of medical mythology — half dog, half man. It’s the only way to explain why so much metaphorical pissing and marking goes on in the world of interpreting CT scans and MRIs. No self-respecting radiologist will ever, under any circumstances, countenance a scan performed or interpreted by another radiologist.

Driving to Denver last week, then, was a sort of medical homecoming for us. It was like returning to our ancestral manor of sarcoidosis. See, National Jewish does limited testing in-house, so they had to send me to other facilities for all my CT scans, MRIs, spinal taps, stress tests, echocardiograms, electrophysiology studies, and heart catherizations. Since National Jewish rarely thought to schedule my tests in advance, they had to scramble once we had arrived. This meant shipping me all over the greater metro Denver area. I had a spinal tap in Littleton at the Adventist Hospital; my cardiac MRIs at University of Colorado, Anschutz Pavilion; my neurological MRI at Rose Medical Center, a kidney MRI at Exempla; and stress tests at the University of Colorado’s other campus. Our memories of Denver are marked by the looming, generic shadows of medical complexes — many of which we are still paying off.

In fact, the entire route to Denver from Montana was a sad tale of medical misadventure. Cheyenne, Wyoming, reminded us of a frantic trip to that city’s emergency room to repair the leak in my spinal fluid (caused by the spinal tap performed in Littleton) that gave me the most shocking headache on one trip home. The Best Western in Sheridan, Wyoming, is the unfortunate place where Andrew and I spent a very long night throwing up with some stomach bug.  Billings, Montana, is where I was first diagnosed with sarcoidosis. And so on.

But before I could get too sorry for myself, it occurred to me that there are a parallel set of markers to go along with the medical ones. I am so lucky to have never had to make a medical trip alone. I have always had Jay and Andrew by my side, as well as my parents, who would make the long trip to help out with Andrew while Jay and I saw doctors. One time, Jay’s Mom even flew in from Boston to care for Andrew. With so much support, I have never had to return to an empty hotel room to struggle with bad news by myself; the flurry of activity around me has kept me from dwelling on my illness.

Every site of a medical test is also a reminder of something more pleasant. Exempla Hospital, where I had to drink some foul-tasting concoction for some imaging scan or another, is also adjacent to an impressive fire station, where Andrew got a personal tour and even got to sit in the driver’s seat of a fire engine. University of Colorado is ringed by Starbucks, so whenever I think of the lousy visits to the cardiologist, I also think of lattes and coffee cake and holding Jay’s hand in the clear, mountain light. There is an awesome Ethiopian restaurant just a couple blocks from National Jewish, where Jay, Andrew, my parents and I had at least a dozen happy meals. My Mom and I have hunted for bargains in the Cherry Creek mall, and one time, I even won tickets to the ballet. And all the congested streets linking the various medical centers have entertained my traffic-obsessed son. Some of my fondest memories involve driving back from some test or appointment and spying Baby Andrew in his stroller, flanked by my parents, sitting on a street corner near our hotel, just watching the cars and trucks go by.

It is a testament to the people I love that my drive down memory lane into Denver has more happy markers than sad ones and that I can now laugh about leaky spinal fluid and spurting IVs and doctors with attitudes. I also figure that I could write a guide to the hospitals and emergency rooms of the intermountain west. With the profits from that book, maybe we can finish paying off Exempla.

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The Small Things

August 9, 2006 at 3:18 pm (Uncategorized)

Last night, when Andrew was talking to his Grandma and Grandpa S., he told them about the Chippewa-Cree powwow we attended a few days ago. “There were dancers and drummers,” he said nonchalantly, before pausing for a breath and dramatic effect. “And there was even a garbage truck,” he concluded in a tone of reverence.

You can’t accuse the boy of not appreciating the small things in life (as long as they have large engines.)

The other night, I was watching television with Jay while I was holding my thinking rock. This is an ordinary white rock that I found on a searingly beautiful beach in New Zealand in 2001. There is nothing really special about this rock, except for the fact that it fits perfectly in my hand, almost as if the wind and the tides and the sand fashioned it for my specifications. I hold it when I get stuck writing and am searching for words. Sometimes I hold it while I talk on the phone. After a few minutes in my hands, the alabaster stone warms to flesh temperature. The rock helps me think, much as I imagine meditation beads center people. My thinking rock is concrete and tactile, yet subtle in its power. It is also a totem from a simpler time in my life. Holding the rock makes me happy.

I made Jay stop the TV program so I could tell him, “You know, this rock is probably one of my favorite possessions. I would feel awful if it were lost.” This is kind of silly because, well, it’s just a rock, and I have a house stuffed full of valuable things: racing bicycles from my glory days, jewelry, a computer.

But I would feel lost if the rock went missing, almost as if I had been cut off from the young woman who stood on a beach in New Zealand on startlingly white sand, beneath jagged cliffs. We were looking for penguins that day, but the only wildlife we found were ravenous mosquitos. We had drenched ourselves in deet, and I was expecting a bad time. Instead, we had this pristine beach to ourselves. Forget the penguins; the sky alone was worth flying across the world.

I’ve thought about the other things that are priceless to me. I keep every birthday card and letter, going back to when I was a kid. I have jewelry from both my grandmothers. I never wear this stuff much because I’m terrified I’ll lose it, and I would hate myself if I did. My journals, my college papers, every scrap of writing and drawing Andrew has done. Seashells from Palau – sand dollars that are already disintegrating back into dust; speckled conch shells that are so shiny they look lacquered; glass bottles left over from the Japanese colonization era that we dug up in the jungle. A large, plastic gold cat that is supposed to bring luck. My mortar and pestle from a market in Laos that I still use to pulverize garlic and ginger when I’m making Thai food. The beaded purse that my mother used for her wedding and I used for mine. My wedding ring. A sandalwood bracelet I bought in the shadow of Angkor Wat.

These things are small in value, probably worth less than a couple of hundred dollars. But they are me. What they have in common is that they remind me of where I came from, where I have been, who I was, and who I am. Some of these mementos are tacky, especially the gold cat with its happy grin, but they serve as a physical connection to the past. Like my rock, if I touch them, it is like following a knotted rope back to another time, place, and sometimes person.

Not to be morbid, but having a chronic illness that involves heart damage has made me contemplate my mortality probably more than the average 34-year-old does. Thinking about leaving this earth makes me wonder about what I will leave behind. I told the Jay the other day that no matter what else I do in my life, I will go to my grave knowing that I had one smashing success – my beautiful and brilliant son. But what else? What do a rock, a glinting cat, and some dissipating sea shells mean? They mean everything. They mean that I walked along a beach and had the sense to bring back a rock that was hewn from the earth for my hand; they mean I saw the world with my eyes on the lookout for bright colors; they mean I appreciated the small things.

I let Andrew hold my thinking rock from time to time. He’ll come down and stand beside me at my desk in our oversized laundry room and ask for the rock. He clutches it as if it something priceless. “I am thinking,” he told me the other day, when he had my rock in his hands. “Good,” I said. “What are you thinking about?” “My trucks,” he answered, before relinquishing the rock. It’s good to love the small stuff.

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Toddler Steps

August 8, 2006 at 12:55 pm (Uncategorized)

This weekend we were fortunate to have the opportunity to attend the annual powwow of the Chippewa-Cree Indians on the Rocky Boy reservation near Havre, Montana.

My husband specializes in Native American law, and Rob, one of Jay’s previous employers, grew up on the Rocky Boy reservation before going on to earning a law degree and an MBA and generally kicking ass and taking no prisoners. Rob invited us to join him and his family for the weekend’s events.

I was, of course, tired in the run-up to the trip. I’m always tired, but the thought of traveling was extra exhausting. We were only planning to be gone for one night, but I have learned that there is a baseline quantity of crap you must schlepp with you on a trip when you have a small child, no matter how many days you’ll be gone – sunscreen, sun hats, fourteen pairs of underwear per day, Tylenol, a thermometer, a book per minute for the car ride, special snack foods, his blankie,the stuffed animals Hippo and Fluffy Rainbow, swim diapers for the hotel pool, baby wipes. You get the idea. Assembling it all seemed like a tremendous amount of work.

But Jay and I have been talking about the importance of getting out and doing things. Having both a small child and a chronic illness too often resigns us to just staying home every weekend. If I’m not sick with something, or Andrew’s not hacking with the latest cold, or I’m not having some type of medical crisis involving expensive monitoring or testing, or we’re not preparing to go on or recovering from one of our quarterly medical field trips to Philadelphia, or we’re not planning a family trip of some kind…we’re usually too exhausted to dynamite ourselves from the house. It gets kind of depressing, though, limiting travel to see doctors or parents, so we’ve pledged to take tiny trips. The powwow was just this – an opportunity to see a piece of the world as a family, without thoroughly kicking the crap out of ourselves.

Once we were on the road, it was perfect and the ton of stuff in the trunk seemed worth the effort. The drive was scenic, and we were forced to go at a more leisurely pace than we normally do. Andrew announced, “I have to go pee,” about every 14 minutes. We’d stop the car, and he would squeeze out a few precious drops of urine. It reminded me of walking my dog when she was fixated on marking her territory. Stop, pee, stop, pee, stop, pee. We listened to all of Andrew’s favorite songs on the iPod, but “Rawhide” and a cheesy Romanian dance tune got repeated the most.

“I love this hotel,” Andrew shrieked as soon as we were in the room. Who knows what it was about that Best Western that made it so special. Maybe the fact that we let him bounce on the bed, or perhaps because it had a pool. (Why is that children so love hotel pools? I know kids who have swimming pools in their back yards who still whip themselves into a frenzy over a hotel pool.)

While we waited to meet up with Rob, we tried to prep Andrew on the upcoming events. We explained that we were going to see some very special dancing – just like we had witnessed in Thailand – done by special people. “Will there be elephants?” Andrew asked hopefully, remembering the painfully touristy cultural show we had taken him to in Thailand. “No. No elephants, but there might be horses,” we said, watching his little face fall. Two-year olds do a terrible job of hiding their disappointment. They do an equally poor job of being culturally sensitive, which was a big concern for Jay and me. You see, there are not many people of color in Helena, Montana. Having brown eyes practically qualifies you as a minority in this town. The two dominant ethnic groups are Irish and German. There are a couple of African-Americans, some South Asian tech people who work for the state, and no Latin American immigrants. You’d think we would have a lot of Native Americans, but most of them prefer to live either on their reservations or in bigger cities like Great Falls or Billings. I didn’t want Andrew to gawk and point at people at the powwow. I also didn’t want him to do something like a toddler we know who saw black folks in Denver, pointed at them, and told her Dad, “Look! Germans!”

The monochromatic hue of Helena is one of the few things about this place that drives me crazy. Not to be too self-absorbed, but the lack of immigrants means that the food sucks here, if you want to eat something besides slabs of meat or mediocre pasta. No Indian buffets for lunch, no steaming bowls of pho at Vietnamese restaurants, no Ethiopian feasts, not even a decent Chinese meal. Mexican food here means meat with seven pounds of cheese melted on it. There is one Thai restaurant, but it serves the coconut-heavy curries of the southern Thailand, not the spicier stuff from the eastern part of the country that we like.

I am also one of those people who genuinely like diversity. I think there are two types of people in this world: those that feel their best when they are with people most like them, and those who feel their best when they are in strange situations with people unlike them. I am definitely in the latter camp. I’ve done a fair amount of traveling, particularly around Asia and the Pacific, and I greatly admire the cultures (and the food!) of that part of the world. But close to home, I also like hearing different languages; I like learning different perspectives; I like seeing how people choose to inhabit this world in unique ways. Perhaps it’s because my family moved so much and traveled so extensively that I feel my most at ease when I’m the minority. When I was five years old, we camped through Eastern Europe (before the Wall came down), and I have to think that this experience of otherness was formative for me.

One of things that sarcoidosis has robbed from me is travel. A few months ago, Jay, Andrew, and I finally took a trip overseas to Thailand, but we forced ourselves to stay on somewhat beaten paths and check in with my doctors before I left. No more renting cars and driving to the Burmese border. No more wandering into Laos for a day of shopping, or camping on remote islands, or eating grubs with chili sauce. Since my illness has made it difficult for us to leave here easily, Andrew hasn’t been exposed to different cultures and people as much as I’d like. (Lots of people would say I’m being a touch melodramatic here. Andrew did spend three weeks in Thailand. He still talks about the Thai friends he made, play-acts with his stuffed animals that they are walking to Thai town called Chontaburi, and eats lahb nua, a meat salad. Plus one upside of all my medical tourism is that he’s gotten to spend time in larger, more diverse cities like Denver, New York and Philadelphia.  That said, there is so much more that I want to show him.)

I don’t know why we were worried. Andrew handles everything with aplomb, and the powwow was no different. I should have remembered that he was right at home from the moment we got to Thailand, chattering in his own made-up tonal language to kids on the beach, gleefully eating fried hot dogs from street vendors in Bangkok, and gamely switching from a fork to chopsticks. He took the powwow in the same sort of stride. He played with other little kids, squatting in the dust. He sat rapt during the singing and dancing and drumming under the lights Saturday evening. Once he got the pattern down, he even sang along in the ululating style of Indian singers. The dancers captivated him, particularly the jingle dancers, who had sewn dozens of bells into their elaborate and colorful costumes and danced so that the bells tinkled in time with the drumming. He also liked the men dressed in costume with feather headdresses and wings on their backs, but he was more interested in driving his trucks on the grandstands by the time we saw them Sunday afternoon. The only person who stood out was me. Jay is olive-skinned enough to blend in, and Andrew was just another kid crouching in the dust and wailing when I tried to force him to drink water. I, on the other hand, am 5’9, not slight of build, and about as white as you can get. My hair is strawberry blonde, my eyes blue, my skin almost blueish in its tint. To my credit, though, I did not point at the Native Americans and call them Germans.

This week, we have all felt buoyed by the trip. We didn’t fly across the world, or even across the country, but we hung out with Rob’s kind and open family, saw amazing dancing, and got to step out of the every-day routine of child care, work, and medical appointments that too often makes our lives pallid and monotonous. People talk about “baby steps” to accomplish difficult tasks like losing weight or going back to school. I think I’d rather advocate “toddler steps” for fun. We’ll follow Andrew’s example, and take small little hops, with an occasional skip thrown in, and enjoy the world around us at ground level. It’s not Ethiopia or Laos, but it sure beats the hell out of staying at home and pining for a big adventure.

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August 4, 2006 at 3:12 pm (Uncategorized)

I had an interesting realization today. I think of my body as something outside of me. I think of it as, well, an it.

Here’s how this epiphany came to me. I got a massage by a woman who specializes in rehabilitating whiplash and other neck injuries. She was amazing. I think she has little angels living in the tips of her fingers. She found the aching, painful spots, and somehow made them feel better. For the first time since the car accident, I haven’t felt completely locked up and in a great amount of pain.

But like many other practioners of alternative healing, she was crunchier than granola. She said things like “listen to the wisdom of your body” and the “pain is trying to tell you something.” And then she said that I should be very grateful to my body for handling the accident as well as it did. Otherwise, she pointed out, I could have broken my neck.

She must have sensed the dubiousness rising off of me like steam on a cold morning. “Too weird?” she asked me, in response to my silence. “Well, how do you think of your body and the pain it is producing?”

That was a damn good question. Every time my neck starts to tighten and throb, I certainly don’t try to discern what it is communicating (with the subtlety of a sledgehammer) to me. First I ignore it; then I loathe it. I’m not terribly conscious of my exact thoughts, but they go something like this: “Stupid neck. Stupid back. Stupid neck pain. Ow.”

When the masseuse was finished, she asked me how I was feeling. “It’s feeling much better. It’s a lot looser,” I said. “It?” she asked, with a gentle smile. Try saying, “I feel much better,” she ordered. I did, but it felt weird.

I spent the better part of my day since the massage mulling over why it was more comfortable to conceive of and refer to my body as a separate entity, and as a thing, something not fully human. I came to the conclusion that part of my sense of my self has been damaged by sarcoidosis. The disease has fundamentally altered how I perceive my body and its functionality.

With autoimmune conditions, such as sarcoidosis, multiple sclerosis, or rheumatoid arthritis, the disease isn’t caused by outside agent attacking and damaging the body. Instead, the illness stems from within. Like other autoimmune conditions, sarcoidosis results from a healthy immune response gone awry. In other words, my body has turned against itself, using its own healing and protective mechanisms against me. That is why the only way that doctors know how to treat sarcoidosis is to bombard the patient with high doses of corticosteriods and other immune system suppressants. They topple the inner watch towers and trick the army of white blood cells into retreating.

Oddly enough, having this internal civil war reminds me of when I was pregnant. Although I loved my baby beyond words before he was even born, I did have a strange sense, especially as my pregnancy progressed, of being colonized from within. A.J., the Neonate, as we called Andrew before he arrived in the world, was clearly making his needs a priority over mine. He slept on my hip so that I couldn’t walk, messed with nearly every one of my bodily functions, and altered several of my organs. As a fascinating article on preeclampsia in a recent New Yorker explains, a fetus is all about surviving. It even changes the shape and structure of its host mother’s blood vessels to make sure it gets all the nutrients it needs.

Of course, at the end of pregnancy, if all goes as it should, you are blessed with a baby and your body (sort of) returns to normal. But what about sarcoidosis? I doubt I will ever again be able to trust the innate wisdom of my physical self, when it has so obviously screwed up so royally. I mean, I can understand a cell randomly mutating to cause cancer. That’s one little mistake, albeit one with serious repercussions. But producing granulomae wherever the hell it feels like? In my heart? Come on, that’s just plain idiotic. Even if the disease goes into remission, I will always expect it reappear, after lurking dormant for some time unseen and unheard.

Although I didn’t end my massage experience with a resolve to listen to my body, I did, at least, feel some compassion for the bag of flesh and bones I carry around. I have been through a lot in my life, and I can feel deep within me the toll this disease and its treatment take on me. “Poor thing,” I thought, as I drove around town running errands. It’s a start, I guess.

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Swimming Lessons

August 3, 2006 at 10:28 am (Uncategorized)

Yesterday I took Andrew to the pool.  At first he was hesitant about getting in the water; he hung around the steps, confining himself to a knee-high depth.  But after he watched the other kids swimming and splashing, shrieking and throwing themselves off the diving board into the warm water, he began to venture out more.  Eventually, he grabbed onto a buoyant plastic noodle, and thrashed around with it on his belly, while I kept a supportive hand on his stomach.  “Look, Mommy, look!” he squealed with delight, “I am swimming!”  And then he wanted to jump off the diving board.

The only problem was that Andrew wasn’t even close to swimming.  If I had let go of him, he would have sunk like a stone.  But he was so proud and so thrilled with himself that, of course, I praised him and fussed over him for being such a monumentally excellent swimmer.   I am sure that the confidence he felt in himself, along with the pure joy of experiencing something new, will carry him into the water next time.  I wouldn’t be surprised if he did indeed start swimming soon.  But in the meantime, I will keep a death grip on him when he’s in the water.

Andrew is only two, but already I can see that one of the greatest challenges of parenting will be letting him go.  How will I ever be able to take him seriously when I’ve cared for him at his most helpless, laughed along with his silliness, and guided him to his first bite, his first step, his first word?  Jay, who often has a gift for being more direct than I, put it more bluntly.  “After years of wiping Andrew’s butt,” he said, “how am I supposed to let him drive and date people?”  How indeed.

Lately I feel like lately I’ve been doing a fair amount of flailing about in the water myself.  As I’m sure my blog entries, with their erratic ups and downs, make clear, I struggle with finding some kind of equilibrium in the midst of chronic illness.  I am not a physically graceful person, and as I swing between acceptance and rage, sadness and happiness, I realize that psychological grace is not my strong suit either.

But there is something empowering about doing the flailing myself.  Even though there are days when I look back and see that I came pretty close to sinking in the deep-end of sarcoidosis and prednisone therapy, I, at least, feel movement and effort.  I have battles to fight, pills to take, doctors to get angry at, pounds to try and shed.

However, the people in my life who love me and worry about me don’t get to thrash around in the pool.  They can only watch me and fret.  Occasionally, they can offer me a supportive hand to keep me afloat, but, for the most part, they have to stand back and wait while I figure things out, come close to drowning, and assure them that I’m swimming the entire time, even though it’s abundantly clear that I’m not.

Yesterday, my Mom called me and was terribly worried about me.  She reads these entries about my depression, my fatigue, and my anger.  She sees me grapple with finding a balance between resting and succumbing to this illness, between taking care of myself and making others happy.  But all she can do is watch and wait for me to figure things out.  I become irritated that people are constantly concerned about me.  “Stop worrying,” I’ll say waspishly, in the same tone that Andrew now uses to tell me to leave the bathroom when he’s in it.  I force myself to exit the room, even though I know he’ll pee all over the floor and his clothes and won’t be able to pull his pants back up.   He has to figure things out.  He has to fail.

As hard as it is for my parents, it’s even tougher on Jay because he has to live with me and watch me slip up on an almost daily basis.  I know I take things out on him, and I know he has to frequently pick up the pieces after I insist on doing something stupid and later pay the price.  For instance, this past weekend, I adamantly used a weed whacker in our yard, even though Jay practically begged me to be sensible, stay inside, and let my arm heal.  Of course I made the arm worse and of course I was grumpy about having limitations.  I couldn’t lift Andrew that night, and I was morose and miserable.  Jay didn’t say, “I told you so,” although he should have.

Having a kid has taught me how impossibly hard it is to love someone with every fiber of your being.  Loving Jay has always been easy because he’s so damn nice to me.  But with Andrew, I sometimes feel like he sucks everything from me, only so he can turn around and leave.  Today it’s the bathroom I’m kicked out of, tomorrow it will be his room.  In a few years, he’ll probably be embarrassed by me when his friends come over.  I can’t imagine how awful that will feel.  But when he does go his own way, I will know that I succeeded as a mother.  In the meantime, I’ll keep taking Andrew to the pool, and I’ll keep a steady hand beneath him.  And when he swims away from me, I will whoop with joy and be terribly proud of him, even though he will be moving out of my depth and I will know it.

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