Rebecca’s Rule of Two

March 31, 2010 at 4:51 pm (Uncategorized)

I’ve been busy since my last post to Chronic Town. I wish I could report to you that my busyness is because I’ve been skiing every weekend, or writing bundles of book pages for my agent. Or that I jetted off to San Diego for a weekend of surf and sun. It’s not that I actually have the energy to do any these things right now. But it certainly would be nice to offer one of these “cooler” responses to the question I get asked all the time: “How are you, Rebecca? How is it going with that chemo?” Although I’m tempted sometimes to say, “What chemo? I’ve been off heli-skiing,” I don’t. Instead, I give my standard, honest response. “I’m hanging in there. I’m just taking it a day at a time.” There you have it.

When I say I’ve been busy, it has been with the events of everyday life. I spent an afternoon volunteering in Andrew’s kindergarten classroom to help the kids make stained glass. I watched Jay coach Andrew ‘s floor hockey team in a close game. We went out to lunch as a family. I made soup. Other prosaic–but nevertheless time-consuming–activities have included driving 90 miles to Missoula to see a doctor, practicing piano with Andrew and going to our lessons, and I’ve writing as often as I can to my good friend Amy in California.

Heli-skiing, I am not. Stained glass and floor hockey and dinner out are not the stuff of adventure living. But they are dear and precious to me–and plenty adventurous given my fragile health. I’ve written before about how the limitations that sarcoidosis has imposed on my life have made me appreciate the everyday routines of living all the more. I have found that I value simple activities much more after disease, hospitalizations, and months of bed rest made clear that I could lose everything. Before I got sick, I tended to judge my life by accomplishments. My unexpected pleasure of playing the piano wouldn’t have counted in this equation where all activities were measured for difficulty, prestige, distance. A family trip to Missoula wouldn’t matter, either. What an awful set of standards I would have inflicted on my son and husband.

I am far from well. But I am doing more and more. And I love the tasks that make me busy. I feel strong and accomplished when I’m able to make soup, or get out of the house with my family. I don’t have to shut off an internal nagging voice that is telling me I’m not really living if I’m not planning our next overseas trip–because that judgmental part of me is quieter. I feel close to Andrew and Jay; I feel connected to our friends near and far.

I continue to learn. Although my activities aren’t the stuff of high drama, they wear me out. For a woman who used to work 10-hour days and then make a multi-course meal for fun, it’s taken me a while to fully comprehend how exhausting it is for me to accomplish tasks like volunteering at the school. After years of “overdoing” it–and then having a sarcoidosis relapse or catching pneumonia or some such mess–I recognize what my limits are. I call it the “Rule of Two.” On a good day–which means a day during a week when I don’t chemo and when I haven’t had many “blind spells” or much vertigo–I can do two things before Andrew gets home from school. For instance, I can write for an hour (sometimes two when I’m lucky) and I can cook. Or, I can talk on the phone for twenty minutes and I can write. Or, I can meet a friend for lunch and cook. Usually, I can have dinner with my family, look over Andrew’s papers from school, help him with homework, and put him to bed on “my” nights in the schedule. I can sometimes flout my own “Rule of Two” and get away with it for a couple of days. Soon, though, I crash and need several days to rebuild.

Recognizing my own limitations and then following them sets up some hard choices. Because talking on the phone has been difficult for me since my first neurosarcoidosis episode in 2007, I can no longer keep up with my family and friends by phone. I also can’t except time with friends from my “Rule of Two.” Everything takes energy–even just talking with friends. I want to write everyday. But–with school art projects and all–I just couldn’t fit a blog entry into last week.

I just got chemo today. Chances are I’ll feel rather wretched for a spell. But I’ll try to write as much– and as often–as I can.

Be well. Be strong. Try and see the beauty in every small task.

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To Poison Myself on Wednesday—Or Not to Poison Myself on Wednesday

March 26, 2010 at 8:53 pm (Uncategorized)

After I posted my last blog entry about deciding to quit getting chemo to treat my sarcoidosis, I’ve been questioned by friends, family, and Chronic Town readers. “Are you going to get chemo next week?” was the one consistent response that I got from the piece.

It’s a good question. When I wrote “Even I Have Limits,” I made specific my hitherto generalized unhappiness about my semi- monthly doses of Cytoxan. I knew clearly and without any doubt that I couldn’t keep going with this drug routine.

What I hadn’t worked out were the details of my declaration. I wasn’t expecting everyone to assume I was done with chemo as of March 23, 2010. I knew I had written forcefully about needing to stop, but didn’t think I was that unequivocal.

Once everyone started asking me if I were done, I began to wonder if I really could be done. And I realized that, yes, I could make it so. It was possible for me to call the oncologist’s office and tell the kind receptionist—who has passed along my frantic questions to the nurses and the doctor for nearly two years—that…what? I was taking a break? I was sick and couldn’t make my appointment? I had moved to Cairo and wouldn’t be available?

My confusion and uncertainty about how to concretize my plan to stop getting chemo brought me to another profound realization. I need to fix the snarl that my medical care has devolved into, so that I can end chemo as part of a comprehensive treatment plan. I am long overdue for a face-to-face appointment with the sarcoidosis specialist who has overseen my care—the one who started me on Cytoxan when I first got neurosarcoidosis. He is preeminent in the field. He cares for over a thousand sarcoidosis patients, teaches medicine, and spearheads and oversees a great deal of research into finding new drugs to fight the disease. However, it is almost impossible to get in touch with him when I have a crisis—like my recent neurosarcoidosis flare-up. Because he is so busy with other patients and with clinical trials, he doesn’t respond to panicked e-mails from a Montana patient or her local doctor about what to do when she’s having blind spells—or gastrointestinal shut-downs, or problems with one of the drugs he’s prescribed.

I desperately want to be done with the exhaustion and vomiting of chemo. But I also want to be smart about it. I don’t know whether it’s even medically “sound” to pull the plug on a heavy-hitting drug like Cytoxan. With some of my less powerful medications, like prednisone, it’s life-threatening to quit them cold turkey. I’d like to have someone looking after me when I do start tapering off the Cytoxan—or stopping it outright, if that’s what is called for. But I don’t have that “someone” right now. I can’t reach my sarcoidosis specialist, and my local doctors don’t deal with changing my treatment plan or determining a new one. Since I have a complicated case of a disease that is little understood, my Montana doctors prefer to defer to the experts.

I’m now tackling the issue of who that expert will be. I have an appointment next month to see my current specialist. In addition to demanding an end to Cytoxan, I also want to use my time with him to explain how untenable our current communication system has become. Maybe he’ll promise to answer emergency e-mails from my doctor—and while he’s at it, foreswear the four-word cryptic notes that are his standard. But I’ve also decided that I want to get the assessment of another sarcoidosis expert. Maybe I’ll just get another opinion on what drugs I should or shouldn’t be taking; maybe I’ll transfer my care if I like this person’s ideas and communication style and system. I’ve narrowed my search to two physicians. I’m going to cast off my remaining inertia and e-mail them both this weekend. Based on if and how they respond, I’ll make some choices about when I’ll see them.

Sometimes following the safest and most sensible path feels wimpy. It’s tempting to cancel Wednesday’s chemo appointment—and never look back. But I’ve invested two years in Cytoxan. I don’t want to risk somehow losing whatever benefits it might have given me by lurching to a sudden stop. I’d like to never schedule another doctor’s appointment—with my local ones, the current sarcoidosis expert, or any potential future experts. While it would be thrilling to set myself free, it could turn ugly if the disease popped up again and I had no one to help me fight it. I might take these risks if I didn’t have a family that needs me alive and as well as I can be. But I do. And I’m (generally) glad of it.

I have a maximum of three more chemo doses until I see my current sarcoidosis specialist. I’ll make a plan with him—or the person I choose to replace him—to either stop the chemo then or taper off it, if that’s necessary. I hate being grown-up and rational about this. But I am grown-up and (usually) somewhat rational. So, I’ll hold out and quit chemo the smart way.

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Even I Have Limits

March 23, 2010 at 2:27 pm (Uncategorized)

I can’t keep getting chemo.

This realization came to me from my body. I awoke yesterday with absolute certainty that I must make changes to my treatment plan. It was as if the muscles in my neck that are knotted from dry-heaving, the depleted armies of my blood cells, and my blasted neurons had all summoned enough energy to deliver a telegram. I opened my eyes, took in the S.O.S. call, and decided that I must give my body a break from the poisons I’ve been willingly taking.

Such clarity is unusual for me. I spend most of my waking hours in my head. This isn’t necessarily a bad way to live. After all, I’m a writer by training and trade. My job is to convert experiences into language, to condense the physical world into symbols and structures the brain can comprehend. But I tend to over-think issues. Unless I keep myself sternly in check, I can turn the making of any decision—from which brand of Camcorder to give my father for his birthday to which doctor to entrust with treating my sarcoidosis—into a fretful, time-consuming mess. I can over-research and over-think myself into a frenzy. Thankfully, I’ve learned that turning every decision into an existential muddle doesn’t ultimately lead me to the best solution—just to a solution along with a tension headache, two wasted days, and everyone I’ve consulted about the topic sick of me and the decision.

Still, I’m not accustomed to such total, visceral certainty.

I wasn’t even consciously mulling over whether to keep going with the chemo. However, I was growing more aware of the physical cost chemo was extracting from me. For the past few months, I have been seriously ill for almost a week after getting a chemo infusion. For example, today is Tuesday—six days after my last dose of Cytoxan. I’m still having trouble keeping food down and staying hydrated. My bowels have liquefied—as if my lower gastrointestinal tract doesn’t want to be excluded from the attention my upper GI is getting with round the clock barfing. Dehydration only magnifies chemo exhaustion. Lifting my arms to wash my hair is more than I can do. Holding a glass of water is hard work. I’ve been sleeping seventeen or eighteen hours a day for the past week, but I don’t feel at all rested. But I’m awake long enough to feel like my life is collapsing around me. Andrew climbs into bed and plasters himself next to me. When Jay has to uproot him—for dinner or school—he sobs. I try to console him, but my tongue is thick and heavy in my parched mouth. I’m nonsensical from the anti-nausea medications. So I wave to him as he stomps out of the room. Before I can worry about him, I’m back asleep.

It’s a testament to how important my epiphany is that I’m even trying to organize my thoughts and type this.

Isn’t there an elephant in the parlor—sitting rather quietly and demurely for an elephant, but sitting there, nonetheless, right next to my blinding realization? What if chemo is helping keep at bay the worst of my neurosarcoidosis? Shouldn’t I talk to my sarcoidosis specialist about this (and maybe get a second opinion) before deciding to stop chemo?

I will consult the experts. I will consider whether enduring a few more weeks or months of chemo hell might finally blast the sarcoidosis out of me. I might even make a list or two.

But after hearing the clarion call of my own flesh, I understand with new depths that the field of sarcoidosis experts includes me.

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The Big Sleep

March 22, 2010 at 2:00 pm (Uncategorized)

Yesterday I slept seventeen hours. The day before that, eighteen hours.

I’m not rested after these monumental sleeps. Instead, I feel almost more exhausted for sleeping so long. My muscles ache and my body is stiff. I feel like I’ve done battle during these long stretches of blank sleep. I’m relieved to be awake, to have returned to consciousness. I listen to the chatter of my family downstairs and contemplate the light falling in patterns on my bed. Everything around me is inordinately beautiful. This is the way I have felt in the past after a car accident or some other averted danger. Never before has the simple act of waking up felt like I’ve dodged a bullet.

Could that sleep have brought me deeper and deeper—like fishing lines unspooling as fast as lightning—until I could not have found my way back to the this room, my family, or even myself?

This sleep feels dark and dangerous. When I was a kid, I saw a science fiction movie. If the killer was able to pursue you into your dreams and snuff you there, you would die in the real world. I don’t think it is possible to dream of oneself as finally dead. Sure, you might dream that you die in a plane crash, but then crazy dream logic allows some part of yourself to watch your own funeral, and then to ease back into life. It makes sense that a consciousness won’t accept its own obliteration. So what am I to make of these hours asleep that are black and dreamless? These endless sleeps are like the darkness that preceded creation. I am taken into the wet and lightless void of the primordial stew—before lightning dazzled the darkness and propelled molecules to come together.

Rationally, I know that even the deepest sleep cannot kill me. It’s the chemo that causes my extreme fatigue. Each dose of this harsh medicine has been incrementally more exhausting. I made a bargain I didn’t fully understand—or, perhaps a bargain I had no choice but to make. Like the anonymous princess in Rumpelstiltskin, I had my back against the wall. She would be killed if she couldn’t spin straw into gold; I was quickly being devoured by neurosarcoidosis. So she promised her first born to the troll in exchange for him converting bales of hay into pure gold. In my post-modern, medicalized version, I signed the consent form and nodded that I understood that fatigue would be a side-effect of the expensive elixir that night keep my disease in check. Maybe now is when I must make good on the promise I cavalierly made when I first signed on the dotted line. What did I promise? Am I consigned to the underworld of my mind like Demeter Persephone?

This sleep feels truly dark and magical—as if it indeed belongs in medieval tales of enchantment and betrayal. Before I experienced these drowning sleeps for myself, I had never even idly wondered about Sleeping Beauty or Snow White being cast into limbo. Did they look as pretty and untroubled as the Disney cartoons of my childhood? Or like me, do they sweat and toil and grind their teeth in a subterranean battle to come back to themselves?

When I resurface from my long sleeps, I don’t shine with bright-eyed smiles or ruby red lips—like Disney’s vision of his heroines. My hair is heavy with grease. My skin, my teeth, and my tongue are tacky, as if I have swum through scummy pond water. I brush my teeth, shower, and brush my teeth again. But I cannot wash away the sour smell and taste of myself. “The inside of a human body—even a healthy one—does not have an appealing odor,” I remember a college biology teacher saying. But I understand his warning, now. My unprincess-like breath carries an undertone of decay—not from my teeth, but from my blood and guts. No matter how many times I scour my teeth, my tongue, and the roof of my mouth, I cannot stop tasting my own demise.

I think all of this would be less disturbing if I remembered even a scene of a dream. But my chemo sleep is dark and dreamless. If I could recall just a flash of a story when I return to consciousness, I could believe my chemo sleep isn’t empty. All this lost time, and I don’t even have a token of my time asleep. Instead, it is as if I have been anesthetized or dead. I come back from utter blankness and blackness. Is my sleep, “death’s brother” (or sister, in my case) as Virgil wrote in the Aeneid? Is this a warm-up or a preamble to the vacuous infinity that awaits us all?

I’m not even sure these mammoth post-chemo sleeps are restorative. I have no choice but to fall into them, but my body and mind seem bruised when I awake. I used to think that sleep was a balm—a lubricant that made the hinges of spirit and flesh function properly. This post-chemo sleep is instead a sledgehammer, a wallop to my psyche straight of out Looney Tunes.

The princesses from medieval fairy tales do find their way back from their death-in-life sleep. Rumpelstiltskin does not get to keep the princess’ child. Sleeping Beauty is not trapped forever in the vines of unconsciousness that hide her. Why shouldn’t I have similar luck? Perhaps I, too, will shake this magic sleep from my hair and my clothes. I will return to dreaming and leave the oceans of darkness untouched—for now.

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Beginner’s Mindfulness

March 18, 2010 at 7:04 pm (Uncategorized)

I’m in the midst of a clearing.

For the second time today, I’ve experienced about an hour when I don’t feel very nauseous from yesterday’s chemotherapy infusion or too fuzzy-headed from the medicines that help control the nausea.

I don’t think I would have discovered these spaces of time if it weren’t for my goal to write five or six times a week for this blog. In the past, I have experienced my post-chemo days as constant nausea and exhaustion, with some vomiting. But once I decided that I wanted to write something—no matter how small—I’ve been finding unexpected treasures, like the nausea-free hour or two.

How could I have spent nearly two years getting this drug every other week and not notice these moments of relief? My guess is that I didn’t truly inhabit the moments in which I dwelt. Chemo makes me feel so awful that it’s easy to get swept away into the awfulness of it. Expecting unending awfulness, I’ve been giving myself over to it.

I’m not saying that these days after my Cytoxan infusion aren’t awful. I simply find it interesting that the process of looking for enough minutes of feeling a little better to string together like beads has made me aware of gradations. I don’t think I can assume I’ll find these strings of time hanging at the same hour each couple of weeks. My body is so pummeled by disease and drugs that I can’t write in my calendar on the next day after I get chemo: “Write from 6:00 to 7:00.” My discovery is just that I rise and fall, ebb and flow, strengthen and weaken on chemo days—just as I and every other human does every day. Even on my worst days, time is not a concrete slab that I must either walk over or be slammed by.

My epiphany seems a bit silly now that I’m writing it. But for me, it has been profound to fully inhabit my body—as best I can—for a full day. Maybe my “chemo days” were the only days I could try this. On my more functional days, I have an internal clock and schedule ticking and pushing me from task to task. It would be much more difficult for me to take stock of myself on a healthier day.

I haven’t relished diving into myself to experience nausea, tooth-grinding, and bones that ache from fatigue. But then I uncovered these clearings of ease. When I live in this body of mine in this moment of mine, I sometimes transcend what I expect.

Tomorrow—the second full day after chemo—is usually my hardest day in the chemo cycle. I have to go to the hospital for intravenous fluids and more intravenous anti-nausea medicine, or else I will barf the whole day. I’m a little scared to face some of those moments with nothing more than books on my ipod and my breath.

But I’m hoping to find clearings in tomorrow’s day, too.

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This Arm Is MY Arm

March 17, 2010 at 9:14 pm (Uncategorized)

It’s difficult to feel in control of your life when you’re stuck in Chronic Town.

Sickness is hell on autonomy. The physical limitations imposed by sarcoidosis have made it impossible for me to work. This can make me feel like a second-class spouse. I don’t like feeling financially dependent on my husband. The sarcoidosis has also interfered with what I do. I’ve written before about having to abandon activities like hiking that I loved to do alone and with Jay. I’m eager to teach Andrew how to use the ice skates he got for Christmas. But I’ve been too ill to feel safe on the ice; even when the headaches and vertigo ease, I still can’t to drive us to the ice rink. Even if I could work the pedals in my orthopedic boot, I don’t know when I might have one of my blindness episodes. I worry that even if I lined up a ride to the rink and laced up my skates, I would immediately tear some band of connective tissue or break a bone. I’ve been ripping ligaments and cracking feet bones with disturbing regularity.

Treatment can take away just as much self-determination as the sickness. Even though all the surgeries and tests I’ve subjected myself to have been in the interest of getting better, they are invasive. For not insignificant amounts of time, I have literally lost control of my own body. Sometimes this lack of control is as simple as not moving for an hour during a cardiac MRI. Or not going to the bathroom when I want so that I can fill my bladder to the bursting point for the best possible imaging. Sometimes I give my body over to gastroenterologists to be sedated and then have my intestines explored with cameras. One time, I consented to have a right-heart catheterization, so that the doctors could assess the extent of my cardiac sarcoidosis. The idea was to see if, while I was sedated but not fully asleep, the doctors could make my heart go into one of its flutter states. They were trying to see if I was susceptible to ventricular arrhythmias—which can be deadly. If I were, they would have implanted a defibrillator. Fortunately, I wasn’t. At least not that day.

This medically-sanctioned and -induced loss of control extends into almost every aspect of my treatment. Showing up for all my doctors’ appointments and infusions is so time-consuming it’s almost like a job. The infusions and some of the pills I take have serious side-effects that also erode my control over how much I sleep, how I feel, and how many days I have left to spend as I will while I recover from my treatments. The chemo I got today, of course, has the biggest impact on me. After almost two years of having it build up in my system, I need at least four days to regain some authority over myself—even simply over how much I sleep and throw up. And when I need to be hospitalized, I quite consciously check my sense of dignity, boundaries, and self-determination at the door. In the hospital, I become a cog in the massive medical machine. I’m weighed at 4 AM; a nurse checks my vital signs at 6 AM. I am dependent on the hospital staff to provide pain relief, medication, and nutrition. I am not even allowed to walk unsupervised the three feet from the hospital bed to the toilet. It is the ultimate in care; it is also the ultimate infantilization.

Ever since I began getting treated for sarcoidosis, I’ve been grappling with these abdications. Other people decide to opt out of mainstream medicine’s conveyor belt approach to healing. But I authorize the tests, the drugs, the hospital stays. I recognize that I’m making a deliberate choice. But it hasn’t been an easy set of decisions. Since I embarked down this path, I’ve danced and sometimes stumbled over the line that divides consciously offering my body for testing from simply becoming a lab rat. I don’t want to forget that I’m the one in charge. When a particular test or treatment suggestion feels ludicrous, I can step away from the “good girl” inside me who wants to obey the doctors. Just because someone has the initials M.D. affixed to the end of her name, does not make her every utterance true. I have the right to fire a doctor, nix a test, and refuse a new drug.

Although it’s a clichéd formulation that the flip side of rights is responsibilities, it’s also true and nicely succinct. When I cede so much authority to doctors, it’s easy to release my other responsibilities to my body. My disease and treatment have overtaken many aspects of my life and my body. Sometimes it feels like I have to look hard to find a way to assert my ownership, and sometimes it’s easier to think, “They’re handling it. There’s nothing I can do.”

I think I have succumbed to this temptation lately. The ongoing chemo along with the neurosarcoidosis flare-up is exhausting. They’ve beaten down not only my body, but also my will. I realized this acutely when I reflected on the hopelessness I felt as soon as I investigated my latest disease manifestation, subcutaneous sarcoidosis. I couldn’t sleep the other night, after brooding about what I thought were hidden threats in articles about subcutaneous sarcoidosis. Tossing and turning in bed, I realized how profoundly I need to do something to fight this disease.

I’m going to schedule a long over-due appointment with the sarcoidosis specialist I see in Ohio. I want him to review all the neurological symptoms that reared up last month; I want him to add subcutaneous sarcoidosis and finding a new sarcoidosis bone lesion on my hip to my list of symptoms. And I want him to communicate with me about this all. Instead of allowing him to rule my life through cryptic three-line e-mails that tell me what drug at what dose to take now, I want to talk with him about what the new forms of the disease indicate for my prognosis, and how to account for both my improvement and the presence of these new symptoms since I started on the newest medications he prescribed. Before I make the pilgrimage to his office, though, I intend to conduct some research of my own. I’ve gotten afraid of reading about failed clinical trials, the calamitous side effects of medications, and people dying from this stupid disease. Instead of “browsing” and skipping from grim-looking article to grimmer-looking article, I want to spend some time carefully selecting sources I trust and learning about my new medications.

I think these actions will help me feel re-connected with the treatments I’ve chosen to receive. But I also want this to be a jumping off point for reclaiming authority over my body, and to remind myself (again) that I still control a great deal of my own health by my diet, exercise, sleep, and stress levels. I’ve done the equivalent of throw in the towel when it comes to my diet. I’ve gained so much weight in my 4 ½ years on prednisone. The prednisone certainly increases my appetite, but I’ve over-fed that hunger with compulsive stress eating. All these extra pounds aren’t helping me fight sarcoidosis—and aren’t caring for my heart and lungs either. I’ve been learning about anti-inflammatory diets, and I started phasing in some changes to what I eat today. I’m not giving up everything all at once, but am cutting out refined sugar and trans-fats this week—and adding fish oil supplements and three times the fresh fruit and vegetables I’m accustomed to. Maybe food won’t cure me. Maybe I won’t lose any weight by focusing on anti-inflammatory foods. So be it. I will be putting healthier food into my tired body. I can always make changes; I know how to count calories very well and can start tabulating my daily totals if I drop a few pounds.

I’m excited to be reclaiming my responsibility for my body. Making the commitment to follow the three changes above—meet Baughman, research medications, and change diet—didn’t feel like a chore, or that I was adding extra work to my already busy life. Instead I feel possibility. I already feel like I’ve reclaimed some of my autonomy. And there’s no medicine that can give me that.

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Under the Bridge

March 16, 2010 at 11:59 pm (Uncategorized)

I don’t know how I could hack it in Chronic Town without Andrew.

In addition to being a wonderful person whose very existence is good for the world, my six-year old, tall, sturdy and golden-haired boy helps me in ways in ways he will never know—and that I am just beginning to appreciate.

Today is an example. I didn’t want to get out of bed this morning. The sun was shining with enough force to seep through the heavy curtains. I had set three alarm clocks the night before—knowing it would be hard to get up. If the alarms were buzzing and bellowing for me to rise for a doctor’s appointment, I might have shut them all when I was still half-asleep and slept for as long as I could. I would have stayed in my nest of flannel sheets until the sun had moved enough to stop streaming in at me.

But I wasn’t going to the doctor. I was going to Andrew’s school to see his kindergarten reading group perform a simple skit of the Three Billy Goats Gruff. While I might avoid an appointment for my benefit, there was no way I was going to miss one of Andrew’s school events. It was bad enough that I was in the hospital last month during the school’s talent show. Although Andrew understands that I was quite ill, he was disappointed that I missed his dance performance. He had even mentioned to me a few days ago how excited he was that I was “finally” going to show up at his school.

It didn’t matter that I was tired—or that my headache and vertigo were more intense than usual. I also ignored the dull ache in my left arm. Yesterday I had a cherry-sized nodule excised and sent off for a biopsy. The surgeon said he was “99 percent certain” the lump was subcutaneous sarcoidosis—a new manifestation of the disease. It had been upsetting to discover that my sarcoidosis is still active, even though I’ve been taking powerful new medications. To make matters worse, I broke my self-imposed rule not to look up any medical condition on the Internet within one week of learning about it or of being diagnosed with it. In about three minutes, I found several frightening tidbits about my new form of sarcoidosis. The one that kept me brooding into the night was a single line in an article. It said that the subcutaneous form of sarcoidosis marks either the beginning of an intense but short case of the disease, or else the “final stage” of chronic, multi-organ sarcoidosis. Who knows if this is true? And did the author use the language “final stage” to politely say “precursor to death”? Do these innocuous-looking lumps mean I will die soon?

If it weren’t for the Three Billy Goats Gruff, I probably would have slept half the day and then worried about my upcoming demise until I could sleep some more. But I put my feet on the floor and kept on going for the rest of the day. Nothing would keep me from that school. It didn’t matter that the taxi I called an hour early to pick me up, didn’t arrive on time. Furious, I kicked off my orthopedic boot, cast aside my concerns about having a blind spell while driving, and tried to drive. But the car battery was dead because one of the doors had been left ajar. Doubly furious, I eyed my bicycle. It had a flat tire. I called the taxi service again and got the same line about the driver being on his way. I now had ten minutes until the play. I put my orthopedic boot back on, limped down the driveway, and waited for a car to come. And waited. And waited. Which is ridiculous, because we live on a really busy street. Finally, a vehicle approached. When it looked like the truck wasn’t going to stop, I moved threateningly towards the center of the road. It turned out to be our plumber. “Gosh, Rebecca,” he said, once I had climbed into the cab. “I thought you must be having an awful plumbing emergency.”

I made it to the classroom before the kids started. Andrew was impressive as Max, the eldest and biggest of the three goats. He’s become quite a reader, and it was fun to watch him work his way through the lines we had practiced at home. One of Andrew’s friends played the troll who lives under the bridge. Maybe it was because I grabbed a seat right behind the two boys, so I could hear their lines clearly. Or maybe it was because my thoughts had been occupied with matters metaphysical before my comedy of errors in getting to the school. But the dialogue between Max the goat and the troll seemed imbued with special meaning. The troll had kept the goats from the green pastures on the other side of his bridge for no reason other than ill-tempered authority. The troll certainly didn’t use the fields himself, since he spent all of his time lurking under the bridge and frightening poor ruminants. But the goats broke free from his reign of terror. My Andrew, speaking as the goat Max, gave the troll fair warning before “kicking him to tomorrow.”

Bruno Bettelheim made a scholarly career by using Freudian psychology to interpret fairy tales. However, in The Great Cat Massacre Robert Darnton soundly refuted Bettelheim’s model by showing how fairy tales did nothing more than express a magnified version of the pre-industrialized peasant worldview. My personal re-interpretation of the Three Billy Goats Gruff as a metaphor for health kicking disease to tomorrow, life kicking disease to tomorrow, and so on, is of significantly less interest than Bettelheim’s or Darnton’s. I won’t subject you to a line by line exegesis of how the story reveals that I will get well—even though a nasty troll of a disease is trying to keep me confined, to keep me away from the rest of my family, to keep me from appreciating the all life has to offer in those luscious green fields on the other side of the bridge. But justice, bravery, and teamwork will pay off. I’ll munch on the greenery, while sarcoidosis will be kicked to tomorrow.

After the skit was over, Jay and I stayed to have lunch with Andrew in the school cafeteria. I didn’t have time to brood about whether the lumps in my arm signal my demise because I was trying to talk with seven kindergarteners all at once. The voices of doom in my head were drowned by the drone of chatter around us. Jay dropped me off at home, so I didn’t have to throw myself into the street for the return trip. (He was in a meeting with his boss at exactly the time I needed to get from our house to the school. Or so he says.)

The play and my time with Andrew in the evening certainly didn’t make my health problems go away. My disease needs more than a change of perspective for that. But I was able to stop focusing on every sarcoidosis-related twinge in my body—from the pain in my head to the broken bones in my foot. I remembered that no one has a signed contract for a long life untroubled by disease. I am not the only one struggling with uncertainty and fear. But at least I’m not alone. Jay is steady and always by my side (the occasional ride to school notwithstanding). Andrew needs me and expects me to show up for his life. Maybe I can follow the example of Max the goat and kick my disease to tomorrow. For now I’ll take comfort that my family keeps me close. We’re working together to get to those fields, despite the troll still hiding underneath his bridge.

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You Have Got To Be Kidding Me

March 15, 2010 at 6:22 pm (Uncategorized)

Typing hurts today. This is because I had an unexpected procedure this morning. I now have a rather deep—but nicely stitched up—hole in my left forearm. The surgeon who removed the hard nodule diagnosed it as subcutaneous sarcoidosis—an uncommon form of the disease. I won’t know for sure if the nodule is sarcoidosis until the pathologist examines the tissue under the microscope.

As far as sarcoidosis manifestations go, the lumps I discovered in both my arms aren’t worthy of fretting. The memory of my most recent hospitalization for neurosarcoidosis is still fresh. The weeks of unbearable head pain, vertigo, and blind spells were terrifying and confusing. I’m doing better, but I’m still working around—not through—this triad of neurological symptoms. I’m also still dealing with the after-effects of sarcoidosis in my bones. I broke two bones that were weakened by sarcoidosis lesions that are large enough to see in X-rays. I’m still stomping about in the bulky orthopedic “boot” to help the fractures heal. The sarcoidosis in my liver is showing its teeth these days, as well. My liver enzymes are out of whack, and I’ve been ignoring as best I can the dull, steady ache that comes from that side of my body. It’s been a while—thankfully—since I’ve been confronted with symptoms of cardiac sarcoidosis. (I am frantically knocking on the wooden side of my chair, so that I don’t jinx myself by this writing positive news). But lately I haven’t had to deal with frightening arrhythmias or worry about whether or not to agree to an implanted defibrillator (AICD). I could go on and fill you in on the exact details of the sarcoidosis in my pituitary gland, lungs, lymph nodes, joints, and spleen. But people in Chronic Town have to read enough of their own medical jargon.

My purpose in recounting the blow-by-blow (or, more precisely, the organ by organ) history of my sarcoidosis is to establish my bona fides with this disease. I truly do have a sense of how life-altering and life-threatening it can be. Given my history with this illness, I feel somewhat silly for being angry and disheartened at today’s discovery. I know I should feel lucky that these sarcoidosis nodules are subcutaneous and not spreading on the surface of my skin. I’m also aware that it’s good news that the subcutaneous sarcoidosis won’t require me to add another drug to the long list of medication I already take.

Even though I can don my rose-colored glasses long enough to acknowledge these facts, I’m still mad at today’s discovery and events. Although the excision wasn’t that invasive or painful, I certainly wasn’t expecting it. This morning I went to my dermatologist for a routine “skin check” for melanoma. She palpated and pondered my lumps, and decided they are too big and have grown too deep for her to remove. So she sent me over to the plastic surgeon. He spent some more time palpating and pondering before cutting out the largest of them. Thirty minutes later, I was wrapped and ready to go. Not a big deal, really, but discombobulating.

I’m pretty tough, though. I can take having hardly any advance notice before someone starts snipping and digging around in my forearm. I might be tired from six years of tracking and then battling sarcoidosis’ trail of slime (that would be my authorial reimagining of granulomae) throughout my body. No, the main reason for my anger is the fact that somehow sarcoidosis—or at least my version of it—does not submit to the lethal cocktail of pills and infusion I take to combat it. This is a devious disease. When I bashed it out of my heart by taking a high dose of prednisone, it moved to my joints and liver; when my doctors added Remicade to the steroids to “finish off” what they thought were the disease’s last gasps, it retrenched and then scuttled off to my brain; the doctors’ pulled out all the stops once my nervous system was involved and added Thalidomide and Cytoxan to the Remicade and prednisone; I enjoyed enough respite to drop the Thalidomide; this gave the sarcoidosis the chance to infiltrate my bones; when the neurological symptoms from the disease became less severe, I thought I was on my way to being cured and was able to cut back the Cytoxan; this slight disarmament made it possible for the sarcoidosis to re-attack my nervous system and become even more venomous; in response, I returned to taking Thalidomide and added Rituxin to this brew of immune-suppressants.

I’m not always so vitriolic when I write about sarcoidosis. It’s conventional to turn to warfare to describe a disease and how it is treated. I know I sometimes slip into this parlance unintentionally. In fact, it’s hard not to use terms of war when describing illness—I fight the disease; I win or lose my battle against it; and so on. But I’m typically able to recognize that sarcoidosis is in my body and of my body. It is the result of my own body’s immune system run amok. However, today I’m using battle words deliberately because today I feel more hostile towards sarcoidosis than usual. Maybe this rage actually is a good sign. Instead of feeling beaten down, and hopeless—as I did when I was just in the hospital—I’m actually feeling well enough now to be furious rather than depressed. Whether it is a healthy emotional response or not and whether it points to my overall better health—I am furious. How can this disease keep finding a new way to manifest itself and make me sick in the process? How can it survive the medicines designed to destroy it? The Cytoxan makes the rest of me weak and tired, so how is it that the sarcoidosis has enough pep to re-emerge under my skin?

My arm is throbbing in time with my head. I feel like smashing something. The irony of this disease—of all disease—is that I cannot pummel the thing that is trying to destroy me because it lives in and feeds off me. It is in me and of me.

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Play Date

March 14, 2010 at 10:17 pm (Uncategorized)

Jay and I were alone. Yesterday afternoon, evening, and night—along with this morning and afternoon—Jay and I were able to sleep, talk, watch television, sleep some more, and talk some more. It was strange to speak about something other than Star Wars. Stranger still not to be interrupted. It was amazing.

It is rare to get a vacation from your kid in your own home. My parents deserve the Nobel Prize in grandparenting for making this possible for us. The came to Helena to see Andrew and I play in our first piano recital. But, they arrived a day early. They rented two hotel rooms down the street, and invited Andrew over for an evening of swimming in the hotel pool, building the new Lego set they got him, eating dinner at his favorite pizza place, and leaving Jay and I alone.

I love my son intensely, and I value the time I have with him—and with him and Jay. I like to think that I’m aware of how precious and fleeting the time is when he is a young child and still wants to hang out with his parents. My time in Chronic Town has only heightened my sense of how much I want to spend time reading, playing, eating dinner with, and snuggling with Andrew. I’ve too often been faced with illness-induced limitations on my mothering, so I don’t think very often about how much work it is to be a mom to an active, strong-willed, and imaginative kindergartener. But Andrew does consume an inordinate amount of my energy. I wouldn’t have it any other way.

But it certainly is nice to get a break. Jay and I didn’t do anything. We just hung out together like we used to before Andrew’s arrival. Because I’m still not feeling totally well and because I’m still immune-compromised and need to avoid crowds—and because I wanted to make sure I conserved energy for the next day’s recital—we didn’t go out to dinner or a movie. Truthfully, I don’t think we would have gone on a “date,” even if we could. It was better to inhabit our home without having to meet Andrew’s needs in it.

When I was younger and childless, I used to think parents had little breaks like this so that they could have sex all night and day long as loudly as they wanted with the doors open. Apparently, I had no understanding of all-consuming children can be. Adult life as we used to know it (sex included) is the true allure of a kid-free evening. I was more excited at the prospect of having a conversation with Jay—one in which he could finish a sentence without the threat of Andrew interrupting to ask if we mind being turned into Legos (and then whispering loudly to pretend that we are now Lego people living in a world of Lego things.) And now that Jay and I live in a state of perpetual sleep-deprivation, a nap and a full night’s sleep sounded pretty sexy.

I thought I wanted more time with Jay alone. I know dutiful, “good” mommies aren’t supposed to say that they relish time away from the constant work and responsibilities of parenting. But I think it’s important to be honest with myself and others about how much I value my time to work, my relationship with Jay, and the beauty of a nap. But when Andrew barreled into the house, I didn’t feel the slightest regret after all. In the tumult of his homecoming, I realized just how quiet the house had been without him.

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Bed Sores

March 13, 2010 at 1:52 am (Uncategorized)

I awoke yesterday morning with the screeching headache and swirling vertigo that signal particular dissatisfaction in my sarcoidosis-inflamed cranial nerves.

I shepherded Andrew through the morning tasks of brushing his teeth, donning clean socks, and eating the breakfast burrito I made for him. After my friend Leah drove him to school, I thought about getting an early start on the day. I wanted to jump into the shower, find some clean socks myself, and get to work on my book. The only problem was that I couldn’t see straight, and the prospect of watching letters and words dance around and rearrange themselves before my eyes—as they do when I’m acutely feeling the impacts of the neurosarcoidosis—made me want to throw up.

So I wobbled up the stairs and went back to bed. The pain and nauseating sensation of ongoing motion kept me from falling back asleep. But I did start to feel better simply by making myself horizontal. I listened to Chris Bohjalian’s new book The Secrets of Eden on a low volume on my ipod. Kate the cat nestled next to me. It would have been a restful and lovely morning if I hadn’t started picking at myself—much like an adolescent who won’t leave her acne alone.

The problem with taking to my bed is that the experience reminds me too much of darker days almost two decades ago when I was seriously depressed. Back then, I would sometimes feel too hopeless to get out of bed. I would lurk in my room, unable to reach out to friends or go out into the world—even though I knew that talking to someone or forcing myself to go to class, my job, or the gym would make me feel better. Some days my will would get the better of my sadness, and I would propel myself up, into the shower, and out of the door. But more often than not, I was paralyzed in my despair. I would stay in bed for days, not even rising to shower or prepare food for myself.

This blog is not the place for the sordid details of my journey out of that depression. But one point is crucial: I learned to be mean to myself. Actually, that’s not quite right. I learned to be mean to myself in a more constructive way. Rather than remain pressed to the mattress by free-floating self-loathing, I somehow channeled that negativity into a useful inner voice—one I envision as a drill sergeant, complete with a megaphone. Instead of laying in bed thinking about how worthless, pathetic, and lousy I was, I let the drill sergeant bellow specific commands at me. “GET UP, get going! Come on, Stanfel. Don’t let the bastards get you down. Get up! NOW!!” The most important step—and the hardest one—was the first one. Once I had my feet on the ground, I had won a victory over despair. Out of bed—and then out of the house—I made it to school, ate regular meals, met friends. Ultimately, the simple (but not) process of sitting up and swinging my feet down to the floor saved my life—or, at least, made my life what it is today.

For the most part, I’ve managed my depression fairly well since those terrible days. Although I believe my “up and at ‘em” routine was what made the difference, I can’t prove that it wasn’t instead the countless hours in therapy, a couple of psychiatric hospitalizations, the cornucopia of anti-depressants that have been pushed on me over the years, positive relationships with people like Jay who have always cheered on my efforts to be alive, or simply the passage of time that brought me farther away from the traumatic events that pushed me into depression in the first place. At the very least, my self-taught cognitive-type therapy was certainly significant. I tackled my depression by first changing my depressive behavior—instead of getting lost in the tangle of gossamer threads that were my depressive thoughts.

My emphasis on getting up and keeping busy as a way to hold back whatever darkness remained (and I never wanted to test how much of that black void stayed with me) meant that I had a full and active life. Once I got those feet of mine out bed and then began walking, I didn’t look back. Would a psychiatrist find this behavior “healthy”? I don’t know. But I do know that with the bellicose voice of my drill sergeant in my ear, I made a career as a free-lance writer, was active in community organizations, traveled far, lived abroad, returned to competitive cycling, and gave birth to a beautiful boy.

Then I got sick.

At first, my chronic illness didn’t seem to threaten my mental hygiene. For the first two years I had sarcoidosis, my nervous system wasn’t involved. I grappled with heart problems, joint pain, and fatigue caused by the disease. But I kept going—even with an uncertain prognosis and threats of a heart attack. I certainly wasn’t jumping out of bed in the mornings, and I did more shuffling that running. But I was still out of bed more than I was in it, and I was still working—and even exercising a couple days a week.

But when the sarcoidosis moved into my nervous system in 2007, everything changed. I became (and remain) bedbound for weeks on end because my world is too swirly and vertiginous to be elsewhere. Although the cause was different, the feeling was all too familiar: the scummy film my skin gets from not showering, the specific twinge in my back from being supine for a long time, the greasy weight of my hair, the boredom that comes from not working—it all signals depression. I felt almost instantly transported back to the worst days of my depression of the early 1990s. It’s as if my memory of depression is housed in my body not my mind. It’s not just that this visceral reminder of the past colors my sense of what is taking place. It’s that I can’t tell whether I’m flat on my back because I’m sick with neurosarcoidosis or because I’m terribly depressed again.

“Get up. Get moving. Feet on the floor. You’ve got things to do, people to see, places to go. Come on Stanfel. Get up. UP,” the drill sergeant still bellows, as if my life depends on it. I sometimes try to follow his orders. I rise and totter about, shocked at how much my head hurts. Even though I’ve convinced myself I’ll feel better once I’m out of bed and trying to work, I don’t. The headache and the vertigo get worse. Only when the words I’m trying to read seem to lose their structural integrity and dissolve before reassembling themselves am I convinced once again that I’m sick. Back to bed I go. But a couple of hours later, I get slapped with the idea that I am succumbing to despair, and that if I let the process begin, I won’t be able to stop it from crashing over me and destroying me. On other days, I am too sick to even make that first effort to rise. After all these years of being heeded, the drill sergeant isn’t used to being disobeyed. So when I sigh to myself, “I just can’t,” to his calls to “GET UP” and ease my throbbing head back down onto the pillow, he takes umbrage at my disobedience and hurls abuse at me all day long.

It might seem that I’m missing the obvious point—that I am in fact depressed in the here and now, and with good reason. And I’m not disputing that. But the terror that grips me now when I can’t get out of bed is that I’ll get lost in the old despair of the early 1990s—not for the same reasons, but because the sensation of bed-bounded-ness is so familiar that I have no confidence that once I start down that emotional rabbit hole I will ever make it back out. If you’ve worked long and hard to shed some weight, over-eating at a single meal make can make it seem like all your progress is in jeopardy. For me, the connection between being physically confined to bed and the free-fall of my former deep despair is still visceral. I fear that despair, and the fact that I can’t run away from it when I’m shackled to the bed by illness. I worry about drowning in it, swamped by being sick with such a nebulous and life-threatening disease and all the changes to my life and to my relationships this has caused.

I know that this fear isn’t entirely logical. When I’m not bedbound, I’m not scared to think about these topics—after all, I write about them for the world to see. But we tame our personal histories by making a narrative of our lives. We assign causality to certain past events and choose to discard others. Yet when the bits we’ve left out of our creation stories reinsert themselves into our lives, even at wholly different places for wholly different reasons—like my current bedbound days, like a holiday food binge—we don’t always reinterpret them as cleanly as we’d like.

I don’t want to let this shard from my past make it so difficult for me to stay in bed when I am sick enough to need total rest. Friends have given me tapes or CDs of affirmations. I’ve listened to these. I’ve written my own affirmations to repeat to myself like mantras when I am feeling my worst about being bed-bound. I tell myself that I am not the same person as I was back then. I tell myself that I am not being weak, lazy, fat, or malingering by needing to lie down. Instead, I proclaim that I am strong and courageous, that I am taking care of myself, that I am making myself well. I remind myself that by feeling the sadness that naturally occurs with the loss I’ve experienced, I won’t succumb to the same depression of my past. So I write about this sadness, talk about it, lie with it next to me, and cry about it. Although I hate this sadness and want to banish it, I try to make space for it nevertheless. I feel its fangs and try not to think that it can devour me. “You are strong to stay where you need to be to get well and be safe,” I say to the empty room and the red-faced drill sergeant.

I truly believe the many positive things I tell myself. I do think that I am strong for taking care of myself. I do believe I am handling this illness as best I can. Still, I hate being unable to be busy in the world. My mood can sink very low when I’m hospitalized, or when the disease flares-up and I am confined to bed for several days at home. Well, of course, I tell myself. Who isn’t depressed by being confined to a hospital bed? Who isn’t saddened by chronic pain and vertigo, and now by spells of sightlessness? I’d be insane if I weren’t sad. What matters is that I don’t linger in this slough of despond. I start kicking and swimming as hard as I can, as soon as I am able, back to the surface. I am proud of myself for this.

There’s a catch, though—those words as soon as I am able. Yes, once I can start living a little, I feel better. Once I am able to write some, cook dinner for my family, visit with friends, watch a little television with Jay, and put Andrew to bed, I feel much less gloomy. Look at my recent spate of writing on this blog. I have been posting almost every day. I am proud of that. Writing injects energy into the rest of my life. Playing with Andrew does the same. Being somewhat active in my own life makes everything different and better. The drill sergeant is less huffy, and I am happier.

But I am only able to do these things because I am able, because I am feeling better—a lot better—than during the awful neurosarcoidosis flare-up last month, because I can get out of bed. Despite the two decades that have passed, despite my affirmations, despite an on-going dialogue with myself about my innate worthiness as a human being, despite taking anti-depressants, despite working now with a very good therapist, I still need to get out of bed and be a little busy not to feel disproportionately, overwhelmingly, frightened and sad. Get my feet on the floor and be “up and at ‘em”—even if it’s just for an hour or two—and I’m OK. Stay in bed all day—or the vast majority of the day—and I immediately feel like I’m suffocating on the same depression that devastated me long ago.

To me, this is the dark side of the valuable precept of “acting the way I want to feel,” as Gretchen Rubin wrote in her book, The Happiness Project. Acting the way I want to feel works for me. But sometimes, I am physically unable to act, and then I am in a bind because I can’t seem to counteract the feelings of disproportionate hopelessness that quickly well to the surface without a prior corollary activity. I can’t feel like I am a good mother without spending time reading to Andrew, standing outside while he rides his bicycle, playing piano with him, practicing writing with him, or baking with him. I can’t feel like an equal partner in my marriage unless I am working and doing my share (or at least some of) of the housework, cooking, and childcare. In brief, I can’t feel like a functional human being unless I am functional. My feelings seem inextricably to follow the lead of my behavior.

And I don’t think I’m alone in this. Is it really possible to have self-esteem without doing anything? I know that I am a touch more goal-oriented than other people might be. (I can hear a few of laughing at my use of “a touch.”) OK, OK, I ‘fess up. I have to work really hard not to have my self-worth dependent on writing a best-seller and then on winning the Pulitzer Prize in literature, having 13 percent body fat, maintaining a home that looks ready for a photo-shoot in House and Garden, parenting a perfectly-adjusted child who is brilliant and athletic, having a marriage that never involves a quarrel, being a dutiful and kind daughter and sister in both my family and Jay’s, and being an extraordinary friend by keeping in frequent touch, remembering birthdays, and hosting gatherings. I could go on for several pages like this, cataloging my unreasonable expectations for myself. But, at least I now recognize how laughably absurd my inner achiever can be. While I sometimes catch myself being mean to myself for not living up to my old standards, I have made great strides in lightening up and appreciating the things I can do. So, when I question whether it’s possible to be happy—or at least, not depressed—when I’m stuck in bed and can’t act the way I want to feel, my notion of action isn’t akin to the old unreasonable expectations. What I’m referring to are pretty basic activities—writing for an hour; meeting a friend once a month for coffee; putting Andrew to bed every other night; watching one episode of Medium with Jay; talking on the phone with my good friend Amy once a week; being able to attend Andrew’s kindergarten play; having a small birthday party for my Dad’s 70th.

So where does all this pondering lead? Can I fight off the bad blues when I am bedbound? If I am stuck in bed with neurological problems am I inevitably going to feel like I’ve traveled back in time and become my old depressed self again? Is there a way for me to step outside my now-familiar blues-busting system of heeding the drill sergeant’s call and doing something when doing something is in fact counterproductive and leads me to being stuck in bed for longer? I’ve proved I can change my ways. I stopped waiting to feel happier to get me out of bed, and got out of bed as a way to feel happier. Maybe now I can discover how to be happy when I must go back to bed.

By working out a new “system,” I am admitting to myself that being laid low by vision loss, chronic pain, and vertigo might continue. It’s a sobering thought. I’d rather go do something than contemplate a future that might involve me spending big chunks of time in bed. And I don’t have any brilliant ideas for not feeling depressed when the neurosarcoidosis gets nasty or for not having my current sadness resonate acutely of the past. I’m inclined instead to live as much and as fully as I can during this time when I’m feeling a little better. Even wondering about possible future relapses is depressing. And I can’t help slipping into magical thinking; like a little kid, I feel as though everything will be fine as long as I don’t let any of the worrisome thoughts come to the forefront.

But I don’t want to lurch from crisis to crisis—frantically and almost manically doing as much as I can without thinking about my emotions when my health allows, and then wallowing when the inevitable relapse occurs and then all those repressed thoughts threaten to consume me. It’s always good to have a plan, right? Having smoke detectors and an emergency plan doesn’t mean our house will go up in flames. (Right?) Mulling over what I’ll do if I relapse won’t make me sicker. So…probably the one thing I can do if I become bedbound again is deliberately not to isolate myself. It’s tough to chat on the phone when I’m in a lot of pain; it’s even harder when I’m really depressed. When the going gets tough, my tendency is to hunker down and wait it out—alone. I even keep my distance (emotionally) from Jay when I’m quite ill. Of course that just makes me feel worse. Instead of being sick, I make myself be sick and alone. It will be hard to pick up the phone when a friend, my Mom, or even Jay calls. What if I give the drill sergeant a new script? Is it possible to have him shriek, “Pick up the phone. Get the phone, Stanfel. Now. Now. Hands on the receiver. Now!” instead of his usual get-out-of-bed routine? I think it is. And I think it’s likely that rethinking communication as an action, rather than just another chore, might make the days when I’m unable to get up and out into the world less lonely. With the support of friends and family—and with their ideas of how to make it through the dark time—I might not feel like I’m back in 1990 and can’t go on living.

They key to surviving the bleakest days in Chronic Town is in re-framing how I think about a challenge. If I insist on sticking to how I used to live—even by clinging to a way of thinking—I’m going to keep feeling lost. Finding a way to feel better when I’m stuck in bed does mean accepting the profound changes sarcoidosis has brought to my life. But this strategizing doesn’t mean I’m giving up or giving in to the disease. Quite the contrary, I’m finding new ways of fighting sarcoidosis.

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