Wishing Well From Hell

October 30, 2007 at 3:38 pm (Uncategorized)

Be careful what you wish for — even if your wish is ironic and self-mocking.

In my last entry, I wrote about “disease envy.” (In the process, I also used up a lot of oxygen. You’ll have to pardon me if you live in the Pacific Northwest and all of the sudden, the very minute I posted the essay, your trees and plants browned and your lights flickered.) Many of us with obscure illnesses like sarcoidosis often turn a jealous eye to the awareness and sympathy that diseases such as cancer and AIDS quite rightly garner.

The day after I posted “Green-Eyed Monster Seeing Pink,” I had a follow-up appointment with my primary care doctor. She’s been troubled by an enlarged lymph node under my arm and promised to consult with both my rheumatologist in Montana and my sarcoidosis specialist in Philadelphia about what, if any, further steps to take about the hard, little nodule. I wish I had some joke about three doctors, a lymphoma scare, and screwing in a light bulb to summarize the past few days, but I don’t. All I have is the lymphoma scare part. Given that Remicade, the current infusion drug I am taking for sarcoidosis, suppresses the very same immune cells that should be prowling my body and searching out and destroying lymphoma cells, the triad of doctors decided that I need a lymph node biopsy. One of them also mentioned that sarcoidosis patients have a significantly higher chance of contracting lymphoma than an average person. (If you have sarcoidosis, and didn’t know this statistic, I’m sorry for sending a storm cloud your way today.) Of course, my primary care doctor decided to convey all this information to me on a Friday at 5:14 P.M. There’s not a whole lot you can do from a medical perspective on a Friday at 5:14 P.M. except worry. Even better, after scaring the crap out of me, my doctor, as of Tuesday at 4:28 P.M, has not called me back to schedule the biopsy whose urgency I was assured of on Friday. Oh how I love those whacky doctors and their mysterious ways.

My solution to most worrisome medical news is to forget about it. So on Saturday, rather than brood about the fact that Remicade has made the chance of me getting lymphoma six times higher (OK! I admit I did a little extra Internet research to freak myself out even more before fully delving into the process of ignoring the problem), we hosted a Thomas the Tank Engine-themed party for our almost four-year-old son, Andrew and three of his same-age buddies. Before the party, Andrew, Jay, and I baked and decorated a train cake; we cleaned the house (or, at least, shoved the most trip-able piles of miniscule Legos into closets; and we covered a table with lots of newspaper). Once the wee ones arrived, we let them go wild painting ceramic trains — and most of themselves. In my opinion, though, the party’s pièce de résistance was the baking session. Four pre-schoolers made cut-out sugar cookies and then decorated them with frosting and sprinkles. I had planned for them to make locomotive cookies with the brand-new train cookie cutter (in keeping with the train theme) I forced my frugal husband to buy, but no one had much interest in matters thematic and were much more focused on using the Halloween cookie cutters. We ended the party by smashing open a witch piñata and sending the children home buzzing with refined sugar from five sources: cake, ice cream, cookie dough, the sprinkles that were furtively shoved into small mouths when I turned my back for three seconds, and piñata candy.

My plan worked brilliantly. I didn’t think about lymphoma or Remicade for the entire party, or for the three hours it took me to sweep up the ant-mound sized piles of sprinkles decorating our floors. Plus, Andrew had consumed so much sugar, I’m pretty sure his blood had turned into maple syrup. Or else, we unwittingly fed him rocket fuel and that explained the forty-five minutes of bed bouncing at 10:00 P.M. Whatever the cause, refraining from murdering my son occupied all my worries until he fell over in bed, mid jump, asleep before his little blonde head was fully on the pillow.

Unfortunately, running from problems only works if you’ve got a good pair of feet to carry you. I’m still in a cast for my stress-fractured foot. The break is not healing, so the doctor ordered me off it and even sent me home on a scooter to make sure I won’t walk around the house too much. (I can’t use crutches because my arm and neck are still damaged from last year’s car accident.) I figured that I could disobey the doctor for one day in the name of all that is Thomas and sugary. But being up for the party cracked my new cast, caused me a lot of pain, and sent me back to bed with only my thoughts and fears (and a couple of good books) to occupy me.

I’m sure the talk of lymphoma is yet another tempest in a teapot. I get so much blood drawn that if I had cancer, how could it evade the constant lab work performed on me? But life in chronic town is a careful life. Its citizens get tested more than the normal folks, probably mostly because we are examined more by doctors. Small abnormalities that would ordinarily get a “wait and see approach” are taken much more seriously in chronic town. I know this. I know I’ll be fine. But I can’t help worrying and wishing that I hadn’t made my sarcastic plea for a more recognizable disease.

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Green Eyed Monster Seeing Pink – I

October 23, 2007 at 9:43 pm (Uncategorized)

(For some reason – probably my extreme wordiness – Chronic Town’s server is insisting I split this entry into the following four installments. Please forgive whatever choppiness this causes. I will try to repost it as a single entry later.)

The other evening, I had a chat with my almost four-year-old son, Andrew, about jealousy and greed. Jay and I have started giving him fifty cents every week to deposit in his piggy bank. But, since he owns at least one version of every book, toy, or game known to mankind, we (meaning Andrew’s parents) decided that the proceeds from the piggy bank should be used in some charitable way. “You can buy a toy for another boy or girl at Christmas,” we said, our voices ringing with righteous enthusiasm. “Or, you can collect the money and then give it to a shelter for families who don’t have a house to live in like us. Or you can send it to a museum to help them study dinosaurs.” We paused, and were met only with a stony silence from our son. “The only rule is that you can’t use the money on yourself,” we concluded. Andrew did not like this idea at all. “But, there are so many toys that I need,” he said, without guile and with much emphasis.

Thus began the Great Sharing Campaign of 2007. Unlike presidential campaigns, ours was quick (thank God) — but fierce nonetheless. Several times a day, I lectured, cajoled, and wheedled Andrew on the topic of sharing. As an only child, this skill does not come to him naturally. The other day, we babysat a one-year-old boy, and Andrew looked genuinely distressed every time poor Peter touched one of Andrew’s many possessions. “I need that,” Andrew would say, relieving the baby of any truck, stuffed animal, or trinket his hands (or eyes) happened to graze. “That is mine,” he said, at least six hundred times in the hour Peter spent with us. Peter’s visit coincided with the Great Sharing Campaign, so it gave me extra ammunition to discuss the concept of ownership. Since most of Andrew’s favorite toys are hand-me-downs from older friends and relatives, I asked him how he would have felt if Nate or Anna or Paul or Laura had refused to let go of their things and give them to him. How would Andrew feel if Mommy and Daddy didn’t have enough money to buy him a Christmas present? If we couldn’t get him a Christmas present, would he like it if another little boy saved money in his piggy bank to choose a brand-new Thomas the Tank Engine train for Andrew? Of course he would! And, anyway, since everything comes from the earth and we all live on the earth, isn’t it sort of silly to think about owning something just for yourself? Don’t we all in a sense share everything? Of course we do! My son continued to look unimpressed with this line of reasoning, so I was shocked to realize we had indeed won the Campaign. A few days ago, Andrew proudly showed his babysitter, Andrea, his piggy back and told her that he was saving up to buy another boy a train. He looked downright proud to be carrying out such an important task. “Alleluia,” I thought to myself. And then I went and engaged in some hypocrisy.

It didn’t start off that way. Really, it was just a trip to the grocery store, and was not intended to be a jaunt into Circle Eight of Dante’s Inferno. Our local Safeway is currently in the midst of a fundraising drive for breast cancer research. Every time you check out, the clerk very nicely asks you if you’d like to contribute a dollar or more to the cause. If you do make a donation, you have the option to fill out a little card on which you can write your name and the person’s name for whom you are donating and then hang the card on a wire near the cash register. Elsewhere in the store, you can buy dozens of items — most of them pink — the proceeds of which go to benefit breast cancer research.

Rationally, I know that fundraising efforts such as this one are a wonderful thing. Millions of women (one of whom regularly contributes insightful and supportive comments to this blog) are diagnosed with breast cancer each year. It is a terrible disease, and the treatment for it, from my understanding, isn’t much better. In no way would I ever want to deprive breast cancer researchers of a single dollar to figure out how to better detect and treat this disease. Rationally, I am expansive. But, in my lizard brain (that part of me loosely identified as the id by Freud, that aspect of me that cares not for other beings) I, like my three-year-old son, am jealous and I don’t want to share. When the kindly cashier asks me to make a donation, I want to shriek back, “What about my disease? Why is no one raising money for my disease? Look at my cast on my foot. That’s from my disease. My disease is called SARCOIDOSIS. Have you ever heard of it? Of course not. No one’s heard of because you’re all too busy drinking out of pink water bottles and listening to Melissa Etheridge songs to worry about sarcoidosis or any other disease not on the pink palette. What about me?” After having these thoughts for several consecutive shopping trips to Safeway, I was so horrified by my lizard brain and its jeering (and thankfully silent) diatribes that I donated five dollars for breast cancer research at the cash register.

Perhaps I shouldn’t have been so astounded by myself. I am a jealous and self-centered person by nature. I am jealous of writers who are more successful than me. I hate opening up a brand-new critically-acclaimed best-selling novel and learning that the author is some twenty-four year old whiz kid. It makes me feel old and untalented. I even got jealous when my own husband (my own husband!) had an excellent essay published in the Los Angeles Times. “Damn,” I thought. “I wish I had something accepted there.” When I was a competitive cyclist, I constantly compared myself to my rivals and did not take pleasure in their successes. I was insanely jealous when I was not selected to be a member of one of the elite racing teams the year before I quit, and even now, years later, I take a perverse pleasure in knowing that not one woman appointed to that team ever did anything remarkable in her bike racing career. I get jealous about sports these days too, watching young women zooming around our city’s streets on bicycles. I want to do that. And I’m jealous I can’t. I’m jealous of friends who have more than one child. Of course, I’m also happy for my Mom friends with many babies, and, after an hour of watching Andrew’s behavior devolve around Baby Peter, I think I should be relieved my doctors are currently forcing me not to have another child. Still, it makes me jealous not to be able to.

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Green-Eyed Monster Seeing Pink – II

October 23, 2007 at 9:42 pm (Uncategorized)

The catalogue of my jealousies is extensive. I’m jealous of people who have strong, personal faith. I wish I could face my disease with knowledge that a higher power was directing the world and would provide a safe haven for me after my death. Conversely, I’m jealous of people who have no faith whatsoever, who are able to approach a challenge and not worry about God’s plan. I’m jealous of people who aren’t sick, especially when they are mothers who also happen to have very clean houses and organized lives. Before you sign off Chronic Town forever, I might add that I also manage to be happy for other people’s successes. But, especially since I’ve gotten sick and I’ve been knocked off my more success-oriented path, I’ve become more aware of my inner green-eyed monster. I’ve learned that it is indeed possible genuinely to celebrate the birth of a friend’s child while also feeling a stab of regret and jealousy. Competitive inner cyclist notwithstanding, I’m usually able to stay away from outright schadenfreude — that tremendously unpleasant character trait of taking pleasure in others’ misfortune.

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Green-Eyed Monster Seeing Pink – III

October 23, 2007 at 9:39 pm (Uncategorized)

Despite my understanding of my inner jealousies (and my resolution to fight against them), I was struck by the fierceness of my response to the Safeway breast cancer drive. From one perspective, my reaction made some sense. Diseases compete for research money from the federal budget. I just spent about an hour trying to find exact, current dollar amounts allocated to disease research — in general and per disease. Since I’m not getting paid to write this essay, I gave up after wading through the thicket of partisan nonsense that is President George Bush’s 2007 budget (feel free to examine it on your own: http://www.gpoaccess.gov/usbudget/fy07/index.html). As best as I could decipher, amidst all the back-patting about health care in America was getting better and cheaper every day under Bush, the two main federal research agencies, the Centers for Disease Controls (CDC) and the National Institutes for Health either lost funding or maintained the same level in a three-year period. For instance, between 2005 and 2007, the CDC’s annual federal budget went from $6.1 billion to $5.8 billion. NIH’s hovered around $28.4 billion for the span. Nowhere in the document could I find (but I did quit looking after a while) a breakdown of these funds. How much of the NIH’s money goes to actual cancer research versus the President’s bioterrorism shield or his abstinence-only sex education that is supposed to cure us of AIDS? Are grants to research universities included in these numbers? I eventually dug up a 2004 New York Times article that approximated Congress’ appropriations for public health initiatives, medical research, and bioterrorism as $50 billion for that year. The National Cancer Institute (which is part of the NIH) maintains a helpful web site that does everything the President’s doesn’t: provide information. They claim to have spent $551 million on breast cancer in 2007 (down from $560 million in 2005); prostate cancer got $305 million in 2007. You can see the other figures at their site: http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding. Nowhere could I locate data about total federal expenditures on sarcoidosis. (As a final note to this barrage of numbers, I must repeat that I did not dedicate enough time to sort through the lies, misrepresentations, or partial reporting that seem to characterize any discussion of American fiscal policy, no matter what your political leanings. Why should it be so difficult for an average US citizen – and a fairly Internet-savvy one at that – to find basic information about how her government is spending her tax dollars)?

At first, I thought to myself, “Wow. $50 billion is a lot of money to spend on medical research. Maybe I shouldn’t feel like there’s a limited pot of resources and that cancer and AIDS are getting all the money.” But then I started looking at defense expenditures. Our country spends $12 billion each month in Iraq. In 2006, we spent $100,000 every minute in Iraq. One look at those numbers and I began to wonder if maybe there isn’t a zero sum gain aspect to dipping into the federal pot. In other words, what the soldier takes, the cancer patient doesn’t get; what the cancer patient takes, the sarcoidosis patient doesn’t get. It’s a terrible way to look at the world, but with a limited amount of dollars to go around, it is, in many ways, accurate.

Maybe you’ve noticed my conscious efforts up to this point on my blog to remain mostly non-political. After all, republicans, democrats, libertarians, socialists, non-voters, whatever, we all get sarcoidosis — and cancer and AIDS, for that matter. I’ve never wanted to disgust — and lose — my readers with my politics. “Disease transcends political parties,” has always been my motto. But, now, I can’t help but consider the possibility that disease and politics aren’t more intertwined than I had previously thought. When I ponder those $100,000 we spend in one minute in Iraq, I wonder what researchers could discover with just a couple hours’ of funding at those rates about tumor necrosis factor in sarcoidosis, or the relationship between exposure to insecticides and the contracting of auto-immune diseases. I don’t have strong feelings about “bringing the troops home” instantly; and I certainly don’t want American forces fighting in my name deprived of the equipment and salaries they need. But, as I scrolled through dozens of pages of political jargon in the President’s 2007 budget, I would have been blind not to notice that a nation’s budget reflects its priorities. And, dear readers, curing cancer, sarcoidosis, or a hang-nail is not the goal America’s leaders right now.

Nevertheless, my visceral response at Safeway to the ongoing breast cancer research fundraising wasn’t about limited tax dollars and our current model of funding disease research. If it were, I would throw up my arms whenever I read about another case of MRSA (Methicillin-resistant Staphylococcus aureus) in the newspaper, and bellow, “What about me? My chances of contracting this awful staph infection are much higher than the average person’s because of all the surgeries and hospital procedures I’ve had performed. Look! MRSA kills more people in this country than AIDS! And they’re spending nothing on it.” (In fact, it was almost funny that the CDC set aside $5 million for MRSA research in the wake of the recent hoopla. I’m not sure $5 million would buy enough latex gloves for the year.) No, my thoughts on matters budgetary came later. My nasty response to the kind-hearted cashiers proffering pink water bottles and pink pins transcended the cold, hard lines of money and the administrative battles waged to win it. My jealousy was nothing more than disease envy.

I’m sure anyone who has ever had cancer, or even a close call with cancer, or a loved one with cancer, is wondering how I could possibly claim to be jealous of contracting such a terrible disease. Rationally speaking, I’m not, of course. Remember, we’re dealing here with lizard brain. My jealousy wasn’t about becoming deathly ill. It was about the “benefits” of having a disease that is universally known, that has a treatment protocol that causes side effects people easily recognize, and that people assume a patient is brave for overcoming. Cancer patients probably don’t frequently get asked, “Now, what is it you have? Sarc-what?” I hope people know that cancer takes a while to get cured or to kill you, unlike with sarcoidosis, in which the chronic nature of the disease seems to downright baffle the world. I hope cancer patients don’t get cornered in stores and asked, “You’re not still sick, are you?” as I and others with sarcoidosis have been. Chemotherapy frequently leaves the cancer patient bald. When you see an emaciated, bald person, you don’t think to yourself, “That poser is trying to imitate Michael Stipe.” Instead, you might tut-tut inside your head and muse, “What a plucky survivor she is.” Your average sarcoidosis patient who has received the most common therapy — corticosteroids — simply appears bloated and maybe fat. I wonder how many cancer patients get told, “Well, you don’t look sick to me, dearie.” Or, my all time newest favorite, “Maybe you wouldn’t feel so sick if you lost a few pounds, honey.” Now, my non-lizard brain knows that people are dumb about dealing with disease and mortality of any stripe, so I’m sure cancer patients have their own list of insensitive and rude things they get told all the time, including mouthy sarcoidosis patients who ramble online about having disease envy.

Really, I’m not trying to be rude or obtuse. What I’m trying to get at is that sick people want to be recognized — not as heroes or martyrs or even necessarily as “survivors.” But they want to feel like a few people in the world give a shit that they are sick and care enough to want to make that sickness go away. That’s what Safeway is doing for breast cancer. By launching such an omnipresent fundraising drive, the company is, in essence, telling the world’s cancer patients that they matter, that money to cure them should be raised, that their pain and struggles are not unfolding in a void. I believe that those of us who are afflicted with sarcoidosis or other weird diseases too often feel like our illnesses are played out in a black hole of knowledge and compassion. Too often the very same doctors and hospital staff who are supposed to provide us with care and comfort end up doing their own version of, “Well, you don’t look sick with your sarca-whatever.” I will even admit that the recent news of September 11, 2001, firefighters getting sarcoidosis in high numbers made me hopeful that more people will learn of my disease and care about it.

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Green-Eyed Monster Seeing Pink – IV

October 23, 2007 at 9:38 pm (Uncategorized)

But whatever the reasons for my disease envy, it is as misguided — and as earnest — as my son’s fervent desire not to focus on another child’s needs when he still lacks a train or two in the Thomas pantheon. Jealousy is ugly. It turns me outward when I should be looking within. Jealousy is also short-sighted. Of course, there are major fundraisers for breast cancer and not for sarcoidosis. So many more people are afflicted with cancer that it makes sense to spend more seeking to eradicate it. Jealousy builds fences with a mortar almost as strong as hate. Why should I spend my time in Safeway getting jealous about cancer research, when I should instead recognize that all diseases are under-funded and under-researched and that our health care system to treat the afflicted is woefully inattentive to many Americans? My green eyes should be clear eyes. They should be activist’s eyes. But recognizing my inner green monster and the fear and loneliness that created her is the first step to improving her skin color.

If Andrew can learn to be excited to change the world — one piggy bank’s worth of quarters at a time, so can I. So, if you have a few dollars to spare, please donate them to cancer research, MRSA research, AIDS research, sarcoidosis research, health care for the poor, or to any kind of effort that seeks to make the sick well again. I will be.

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Scurvy Pirates Are Attacking The Ship!!

October 17, 2007 at 8:58 pm (Uncategorized)

Thanks to Paul, Barb, Kendra, both Carols, Cathy, Martha, and Edwin for your kind and supportive comments last week. I’ve been having a tough time, and your varied insights as parents and sarcoidosis survivors, along with your encouragement to keep writing, mean a lot to me and helped me through a crummy few days.

On one of those crummy mornings, Andrew spent most of breakfast time making a particularly ugly face. He had contorted his facial muscles into an expression that contained aspects of a sneer, a grimace, a scowl, and a frown. “What are you doing with your face?” I asked, somehow refraining myself from warning him that it might get stuck that way. “Oh, I’m practicing being grumpy for Halloween,” he said, quite cheerfully, as he instantly relaxed his face back into its normal, cute visage. “As you know, pirates are extra grumpy,” he added.

I didn’t think there could be anything cuter than a three-year old beginning his sentences with dependent clauses like “as you know” (sometimes he sounds like a college student with a lisp) until he tried on his Halloween pirate costume. Truthfully, he wasn’t much interested in the silky black jacket with billowing sleeves, or the tights black pants embossed with skulls and crossbones. He refused to try on the earring, and was lukewarm about the pirate’s hat. What he loved was the eye patch, the plastic “pirate cutlass,” and most especially, the “pirate pistol,” which is nothing more than a cheap toy gun embossed with antique-looking plastic filigree.

He cried desperately when I made him take off the costume and, even worse, relinquish the pirate pistol. My fear was that he would wear the outfit constantly, break the gun, and eventually lose all interest in piracy by the time Halloween rolls around– and then demand a new, and more esoteric costume. So I told him the Halloween witch would keep his pirate costume (and his pirate pistol) until it was time for him to wear it. He then made a grumpy face that outdid his morning’s efforts. This is, after all, the same Halloween witch that flew in on her broom last year and confiscated about fourteen of the six hundred pounds of candy he got in exchange for what has proved to be a lead-painted James from the Thomas the Tank Engine set. Last year we told him the Halloween witch gave his extra candy to boys and girls who had been too sick to go out trick-or-treating. The candy for train trade was dubious at the time and became even more so when a few months later we had to send lead-coated James back to China as part of a massive product recall. Come to think of it, if he actually had a college student’s vocabulary, he’d supplement those dependent clauses with some spice and call her the Halloween bitch instead. What nerve, taking his candy, his costume, and then trying to buy his sympathies with a poisonous toy! Jay and I fully acknowledge that Andrew will probably spend many hours working out his Halloween b/witch issues in therapy. But fortunately, by the next morning, Andrew seemed to have forgiven his parents and the Halloween b/witch for holding his costume. The therapy will come into the picture much later, when he hits his forties and has a midlife crisis involving some combination of an elderly woman, a broomstick, and free trade agreements with China.

Unlike my son, I haven’t had to practice being grumpy. It’s been coming to me quite naturally. Although I haven’t lost any candy, I have given up even more mobility. As expected, the orthopedist sent me home on Friday in a cast. Jay convinced me to choose day-glo orange from the eleven available cast colors. “Andrew will love it,” Jay said. “It’s perfect for Halloween.” That it is. It’s also blindingly visible. If I could actually walk more than a few feet in it, I’d be perfectly safe out hunting, or jogging at night, or even lost at sea. As it is, I just get inquisited about my injury. I can’t even blame people for being nosy since I have the equivalent of a neon sign on my leg. But Andrew does like it. Or maybe he’s just reassured by its brightness and is certain the Halloween witch can now find our house and return his pirate pistol with my leg serving as a beacon in the night.

The cast, in itself, isn’t that bad. Yes, I have to swath my leg in garbage bags and then duct tape the garbage bags to my skin before I can take a shower. Yes, my foot has begun to hurt exponentially more inside the cast. Yes, watching me walk up and down the stairs of our three-story house is a comical sight. And yes, my foot is beginning to smell a bit, shall we say, sour. That’s all manageable. What is less manageable is the orthopedist’s assessment that I likely have not one, but two, broken bones in my foot. “Fine,” I told myself with this news. “I’ll call it two for the price of one.” But then the doctor went on to explain that the second potential fracture—the fifth metatarsal on the outside of my foot—is notoriously slow to heal since the area gets so little blood flow. Typically, surgery is in order. “But there would have to be a lot of arm twisting for me to operate on you,” the doctor said—citing my susceptibility to infection, my slow healing, and the fact that the sarcoidosis granulomae infiltrate scar tissue and bone breaks as reasons to be cautious of cutting me open. His strategy is to keep the cast on for a while and monitor both areas on my foot in a couple of weeks using bone scans. This means more watching and waiting and testing—the life of a sarcoidosis patient.

If you had spent the evening after my visit to the orthopedist’s at our house, you would have thought that I was the Halloween b/witch and that you’d better keep a fast grip on any pirate pistols or candy you happened to have. I was upset by the thought of my bones literally breaking beneath me. It’s bad enough to have this disease, but the double indignity of having the treatment (prednisone) erode my bones until they are fracturing felt like too much to bear. A little while after we came home from the doctor, Jay asked me to do something simple, and I responded as though I was the woman on the broom. “I’ve just had really bad news,” I said in a tone that melded fury and self-pity. “I think I have the right to be depressed about it.” True to my word, I was depressed and morose about it all that evening—and most of the next day. I sulked about the dinner Jay made, resented feeling like I should help with the dishes, and was generally unpleasant to be around.

Finally, I just got sick of myself. My foot continued to ache. The cast continued to bother me. My bones remained broken. But making everyone around me miserable wouldn’t unbreak the bones or magically cure them. I could act like someone just gave my extra candy away, or I could rise to a new challenge. I won’t say I was the paradigm of cheer the rest of the weekend, but I did do a better job of coping with the latest setback. I try and remind myself that my feeling that sarcoidosis has maliciously invaded my body, one organ at a time, much like pirates scurry over the sides of a ship, is just that—a feeling. It’s no more real than the Halloween witch. I have an illness, not a curse. The disease doesn’t have a malevolent mind of its own. Like Andrew, I need to ride out the weird disappearances of certain pleasures in my life, and like him, I’ll need to have faith that they’ll return. After all, my neon orange cast can light their way.

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Bad Mommy

October 10, 2007 at 12:44 pm (Uncategorized)

“Mommy, let’s go for a hike up the hill,” Andrew said yesterday. I wanted nothing more than to agree to his plan. It was a glorious day. The forest fires that plagued us all summer are finally extinguished, leaving the sky a clear, bottomless blue. The air was warm, but it carried an edge of cold in its breeze, almost like the tart aftertaste that balances a bite of sweet apple. The leaves have turned, and, in these few precious weeks before our first winter storm, our world is a riot of color. The Japanese maples in our backyard are a deep red, almost the color of congealed blood. Our box elder tree is bright yellow, and the maples are orange and red. Climbing up the trail behind our house wasn’t just a good idea. It sounded almost holy in its rightness. How else could Andrew and I pay homage to the beauty around us than to head out into it, join hands, and breathe deeply as we ascended through the vivid trees?

Instead what I said was, “I can’t.” And then I explained for what must have been the twentieth time that day that my foot is broken, that I have to wear this silly boot to protect it, and that I need to stay off the broken bone as much as possible. In other words, no hiking.

“Mommy, let’s play horsie,” Andrew said a little while later, indicating that he wanted me to crawl around on all fours, while he rode on my back and gently held the “reigns” of my long hair—all the while hollering, “Giddy up, Mommy.”

“I can’t,” I said. “That would hurt my foot.”

“Mommy, let’s dance,” Andrew proposed, later that morning, as we listened to a particularly toe-tapping zydeco mix on the stereo. After half-heartedly gimping around for a song or two, I sighed and said, “Andrew, I can’t. This hurts my foot.”

Perhaps I’m overstating somewhat, but it feels as though I tell my little three-year-old, “I can’t,” to nearly everything he envisions. If I somehow incorporated my new mantra of “I can’t” into a meditation practice, I’d be a guru of peace and well-being. Instead, I just keep telling Andrew “I can’t” and then hating myself for it.

It’s not just my broken foot that makes me feel like a bad mother. I simply don’t have the spunk and stamina I’d like to have as a parent. Before Andrew was born, Jay and I visualized the hikes and camping trips we would take together with our hypothetical baby. We planned potential trips and even talked of living abroad again before our then unnamed and unknown kid started school. It’s almost funny how far I have fallen from these original goals. I can’t imagine actively caring for Andrew for eight straight hours in a day (by actively I mean not resorting to a kiddie movie or some time in front of the computer together watching video footage of volcanoes erupting) much less moving to a distant land. I know part of my discomfort is a wholly natural part of adjusting to parenting. Every mother I know had vague and totally unrealistic plans for herself and her child before said child actually entered the world and sucked every last bit of energy (along with her general will to live) with it. But I do believe that my chronic sarcoidosis—and all the attendant problems its treatment has brought—have made me unable to carry out basic mothering tasks.

Jay and I—with help from Andrew’s grandmother in Boston—have been able to find Andrew high-quality, one-on-one childcare for the hours that I need to rest. He has thrived with Andrea, and he is a smart, funny, immensely verbal young boy. We’ve recently started him in a good pre-school. He has made new friends and seems to be learning something new every day. Because we needed a few extra hours of childcare, we enrolled him in the pre-school’s after-school program, which takes him on field trips around town, explores different parks, and has other planned (and fun) activities. I know rationally and reasonably that Jay and I are doing right by our son. We read him lots of books; we take him on trips; we don’t strike him; we feed him three home-cooked meals a day; he gets exercise; and, when we are unable to provide care for him ourselves (Jay because of work, me because I’m sick), we’ve found him the best babysitters and pre-school available.

Unfortunately, rational thoughts don’t hold sway with the heart, and I spend my spare moments gnawing at myself with guilt. Every time I drop him off at pre-school (especially for one of his longer days there), I get so guilty feeling that I have difficulty breathing as I drive away. “Do more. Do more. Do more,” the voice inside my head sternly admonishes me. And when I do more—by pulling him out of school early for extra one-on-one time with me—the voice simply sneers at my efforts. Yes, I spent three hours playing with him and reading to him, but I couldn’t take him to the park because of my foot. You call that being a good mom? Yes, we baked cookies together, but did we do something educational? Other mothers don’t have their kids in nearly as much daycare. And on. And on. I talk about my Mommy anxieties with Jay. I talk about my fears with friends. I am temporarily reassured, and then the yammering in my head starts up again. “Do more. Do more. Do more.” This guilt is corrosive. I can feel it eating away at me from the inside, sucking up what little energy I do have.

At least I know I’m not alone. I’ve learned that it doesn’t take getting a chronic illness at the same time as giving birth to your first child to qualify a mother for a gold medal in the Guilt Games. Nearly every mother I know is plagued with some form of anxiety about the childcare decisions she has made. Unfortunately, instead of owning up to this anxiety (no matter how irrational it might be), most women get defensive and unpleasant about the entire topic. The stay at home moms are sanctimonious. The working moms are equally so. Each faction claims their choice is the best one—for their kid, for everyone’s kids. I could tell these smart, capable, caring mothers that each of us is doing the best we can and cobbling together the best childcare arrangements for our kids and that there is no right answer to the question of how to raise a kid. But, I don’t. Because I know reason has nothing to do with their fears, or mine.

Jay’s advice is for me to enjoy the time I spend with Andrew, rather than clouding the moments I have with my son with worries that it’s not enough. Although I know he is right, I also think it is a lot easier for fathers to be more at ease with matters of childcare. Jay never stresses about the educational value of watching football with Andrew on a Sunday afternoon. I would. But in our culture, fathers get fawned over for any time they spend with the kids. It never fails to amaze me how much praise Jay gets for bringing Andrew to the farmer’s market or to soccer practice—tasks a mother does without notice, much less admiration. “You are so lucky,” I get told by other mothers. I know this, and I try to remain thankful to Jay for all that he does. I only wish I didn’t need this luck, that I could be the one up early on a Saturday with my son, that I could do all that I expect from myself.

If you’ve read some of my past entries on this blog, you’ll know that there is nothing I hate more than ignorant asses who tell me that I’ve gotten sick for a reason. Implicit in their view is a judgment that I brought this awful disease on myself. I will rail against this notion with every breath I have (and heap a curse on them that they’ll get a nasty disease with every other breath I have). However, my belief that I have been struck at random doesn’t mean that I don’t think I can learn from my illness. For instance, having sarcoidosis has magnified many of the quandaries of motherhood. I think I would have the same experiences and emotions if I were healthy. But having a chronic and potentially fatal disease makes me feel them more intensely and experience them more acutely. For example, being physically unable to walk with my son simply amps up the Richter scale of guilt that all mothers feel for not being able to do everything they wish they could with their child—whether because of work, because they’re losing their minds at home, or because they have other tasks.

On Friday I return to the orthopedic doctor. Unless my fractured foot miraculously heals in the next thirty-six hours (after eight weeks of stubborn unresponsiveness to treatment), I will limp out of his office with a cast on my leg. Along with the plaster, I’ll have new restrictions. Unfortunately, Andrew and Jay will share these limitations. There’s nothing I can do about that. I cannot knit my bones together. However, I can try to control the battery acid bath of guilt I’ve been washing myself with every day. I owe it to myself to recognize that, like mothers across the world, I am doing my damn best to raise my child without destroying myself. I owe it to my son to be an example of living well under pressure. I owe it to my husband to unknot the ball of anxiety I toss at him every day. After all, there are ways for us to be together in this. This weekend we could go for a drive up into the autumn-hued hills, up towards the limitless sky. Who says you have to walk to pay homage to this world?

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Write to Privacy

October 5, 2007 at 4:30 pm (Uncategorized)

Last week a friend told me that she found my recent blog entries to be more personal and more revealing than previous ones.  And while at my brother’s wedding, a relative asked me why I found it necessary to divulge so many private details about my life for strangers and family alike to read.  His was a good question.

My friend is right.  My essays on the Chronic Town site have steered into new territory, and the sharp turn I’ve taken into topics such as prednisone-induced binge eating and my fervent (and so far thwarted) desire to have another biological child has been a calculated one.  It’s not easy to put these thoughts down and then cast them into cyber-space for all the world to read – or snicker at.  Posting “Thin Blue Lines”– my meditation on a negative pregnancy test – was uncomfortable.  Do I really want people ranging from my mother to my mother-in law and from friends down the street to perfect strangers in distant countries to have access to my heart and its longings?   Not really.  But then again, I do.

I come from an intensely private family.  This assessment is meant to be neither judgmental nor sinister, simply that we tried to solve our problems within our family before turning to the outside world.  Like other families, we have our own rituals for the holidays, our own code for speaking to one another.   I mention this only to indicate how counter-intuitive the public revelatory process of this blog is for me.  I often think it would be better to hide my sickness and the changes it has wrought in me from the world.  It would be safer and easier to keep my sarcoidosis contained within my body and within the familiar nexus of my family.

Privacy is an odd concept – and a particularly modern one.  After all, it’s a luxury to worry about privacy, when two hundred years ago we huddled twelve to a room and starved to death en masse.  But times have changed.   On the one hand, stringently maintaining privacy can keep you safe.  Who can steal your identity if you never divulge your social security number?  Who can discriminate against your sexual preferences if your sexual preferences remain unknown to everyone but your partner?  At the very least, vigilantly patrolling the boundaries of the self creates the illusion of safety.  To parrot the precept of post-modern über philosopher Michel Foucault, knowledge is power.  Once somebody knows you, they can regulate you, control you, try to own you.  It’s scary stuff.  But on the other hand, strident privacy can strangle you.  Who wants to live in utter privacy?  It is a joy to be known among friends and family and coworkers.  People can care more deeply and more genuinely about you when they understand you.

I didn’t think about these things when I launched Chronic Town.  All I knew when I started writing the first entry was that I was sick, that I was scared, and that, even with a loving husband, a cute baby boy, and a helpful and generous family to support me, I felt utterly and terribly alone.  I had a disease that no one had ever heard of – including me, when they first diagnosed me.  Worse, I had a form of a disease that didn’t conform to the optimistic projections I found on Web sites such as the Centers for Disease Control’s, which chirped about how most cases of sarcoidosis were mild and spontaneously remitted.  Whatever I had wasn’t mild, and it wasn’t spontaneously remitting.  Instead, I had doctors (highly qualified ones, with strings of letters and titles after their names) cautioning me about my mortality expectations.  I was 34 years old and had just been given what felt like a death sentence.  My husband and my parents were as traumatized as I was, so I felt like I couldn’t break down in front of them.  My son needed me to care for him, not sob in front of him about dying before he started school, when all he really wanted was a snuggle and a hit of breast milk.  My friends had no concept of what was happening.  Even keeping them informed of the latest medical news (“I have pulmonary hypertension!”  “No, wait! I don’t have pulmonary hypertension!”) was feeling like a full-time job, and an isolating one at that.  I’m a writer, so when I have something important to communicate, I turn to the written word.  I didn’t think through the meaning of Chronic Town; I simply felt compelled to write.

I’m not sure what my life would look like if I hadn’t started this blog.  Writing about living with a chronic illness has proved to be liberating.  Finding the words to express the daily frustrations of sickness and pain and the nagging, thrumming fear of death, have helped me come to terms with my new, post-diagnosis reality.  I’m not the same woman I was when I began writing these essays.  The disease, and all it has brought with it, have changed me – physically, emotionally, and spiritually.  I don’t necessarily like all these changes; sometimes I pray fervently in the dead hours of the night to return to my old, strong self, the woman who could hike twenty miles up a mountain.  But showing up on the page here has helped me show up for my life as a writer, a wife, a mother.  It takes a certain courage to say what is true, even if it makes me wince.  Just the process of truth-telling has made having a chronic illness easier, privacy concerns be damned.

But this blog has done more than give me the space to vent, to explain, to come to terms with my own flailing health.  Quite unexpectedly, it has opened a network of communication with fellow sarcoidosis sufferers and their families across the world.  A simple sentence of encouragement  from Paul or Nancy in response to a particularly sad blog entry (and day) gives me the strength to keep putting one foot in front of another.  These folks are also sick; they also have children; they are also scared shitless and witless.  If they can do it, so can I.

Maybe my confessional mode of writing bothers a few folks related to me.  Maybe they find it unseemly for me to air the dirty laundry of my illness for all the world to see.  Sickness is messy –  it’s the stuff of blood and guts – and, as a culture, we’ve been well trained to hide it away behind hospital walls and in nursing homes, to whisper its secrets to a trained caste of healers.  But it’s all this lurking behind walls and mumbling to the White Coats that makes it so terrible to become sick.  The alone-ness is worse than any symptom.  People write me and tell me that it helps them to read my ramblings.  I hope so.  Because it helps me to hear from you.

Perhaps I feel able to leave the neat hedgerows of propriety and privacy precisely because I’ve gotten sick.  As anyone who has spent more than fourteen minutes in a hospital will testify, the medical system will quickly cure you of any notion of privacy.  Doctors, nurses and aides touch your private body parts with less concern than our veterinarian examines our cat.  I’ve had to recite the intimate details of my physical self in front of roomfuls of strangers.  I’ve had needles and tubes in more places than you can imagine.  I’ve had my butt and my breasts fall out of too-small hospital gowns.  I’ve had doctors interrupt me, and then fault me for not communicating.  After all this, writing about my reproductive woes seems downright demure.

I know that eventually I’d like to convert this blog into a book.  I’m not sure how to do that (if there are any editors out there reading this, feel free to offer advice), but I remain convinced that my perspective has value.  Perhaps that’s why the casual remark of a relative I see so rarely has prompted such a flurry of introspection.  I don’t see my writing as a sordid unveiling of private details; I view my project as one that connects me with others (both healthy and ill), educates people about life with chronic illness, and breaks down the barriers of distance and fear that make it more likely for the chronically ill to feel alone and afraid.  Most of all, it keeps me from feeling quite so alone and afraid.   That’s worth a little violation of privacy, don’t you think?

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