Holiday Update

December 23, 2011 at 6:55 pm (Uncategorized)

Thank you so much for reading this blog. I am on vacation with my extended family now, and am discovering that high humidity is really bad for my head and vertigo. Sigh. I hope to keep blogging here over the next week, but if not please know that I a very thankful to the community you create here and will be back blogging in the new year.

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Music Soothes the Savage—But Possibly Not the Sarcoid or 7-Year Old Boy—Beasts

December 21, 2011 at 5:50 pm (Uncategorized)

Our house has been quieter lately. There’s still the usual door slamming and video game sound effects. Jay and Andrew still communicate between floors by hollering through a heating vent. What’s been silent is our piano.

Since the sarcoidosis aggressively re-infiltrated my joints a few weeks ago, playing the piano has become nearly impossible. I can’t get my aching, swollen fingers to unfurl correctly on the keys. And without me providing motivation—or coercion—Andrew has also quit practicing.

We’ve been taking lessons together since he was five (he’s about to turn eight). Music was an important part of my childhood, and everything I read about child development suggested that getting kids started on music or foreign language earlier grows their little brains bigger. And we found a wonderful piano teacher. Theresa is pretty much the antithesis of the stereotypical knuckle-cracking, pinched-lipped, old biddy perfectionist that everyone seemed to have endured 20 or 30 years ago. She loosely follows the Suzuki playbook, but lets her students pick fun songs to work on along with the regime of “Lightly Row” and “Honey Bee.” She doesn’t start kids on mind-numbing scales until they’ve progressed enough to see the reason for inflicting scales on themselves. Instead of reprimanding kids for not practicing—or not practicing adequately—she rewards them with the candy of their choice from her heaping candy bowl if they completed five 20-minute practice sessions each week.

At the time we started Andrew on piano lessons, I was in the throes of neurosarcoidosis and infusing Cytoxan every other week to treat the intense vertigo and pain the disease brought. I felt like I wasn’t participating in Andrew’s life. Before Andrew and chronic illness came into my life in the same few months, I’d imagined myself as an active, outdoorsy parent teaching Andrew how to do all the active, outdoorsy things I loved, skiing, ice skating, snow shoeing, hiking. I foresaw long family camping and backpacking trips. Instead, I spent more days than I’d like to remember laying in bed, vomiting after chemo or immobilized by vertigo, while Jay took Andrew out to teach him all the active, outdoorsy pastimes that were mine.

“Have you ever had an adult take lessons?” I asked Theresa one day after Drew was done banging out “Twinkle Twinkle Little Star” and inhaling a Kit-Kat. I had played the French horn through high school, and found myself drawn to the idea of reconnecting with music and of being able to share that with Andrew.

“Many times,” Theresa said. “But my adult students have to participate in all the same recitals as the kids.”

“I couldn’t just take lessons with Andrew and sit out the recitals?”

“No, that wouldn’t push you enough. And it wouldn’t be fair for the kids like Andrew who have to do the recitals.”

I could get through a recital, couldn’t I? I’d taught English literature to non-native English speakers in a foreign country. I’d taught creative writing workshops in the basement of a bookstore. I’d given a little speech in front of the huge student body of a Thai high school. I could play music with a bunch of kids, right? And there’d be chocolate.

“What do you think, Andrew?” I asked. “Would you want to do music together? Or would you like it to be your own thing? I’m OK either way.”

“Do it!” Andrew said. “I want you to do it.”

He seemed genuinely excited at the idea.

“I’ll do it,” I said, keeping my eyes fixed on the candy bowl.

At Theresa’s recommendation, I bought my own copies of Andrew’s piano books. Since I’d been away from music for so many years—and since I’d never learned proper piano fingering or gotten very comfortable with bass clef notes (with French horn you only have to contend with treble clef)—I’d start at the very beginning, with the first Suzuki book. Andrew and I started together on “Twinkle Twinkle Little Star,” which the Suzuki book called “Combination.” I was very excited.

From the beginning, I progressed a lot faster than Andrew did. Playing for a few weeks jolted loose some memory of all those years I’d spent on my French horn. Of course I was also an adult with much more advanced fine motor skills and cognitive capacity (on good days at least). We talked it over. “I don’t want to play if it makes you feel bad,” I said. “I’m a grown-up, and I’ve done this sort of thing before. This isn’t a competition. I want to do this with you.”

“You don’t make me feel bad,” Andrew said. “You’re really good.” He has always seemed genuinely pleased for my progress and proud of my developing skills. I’ve tried to be attuned to our skills discrepancy. I don’t want to lord my abilities over him or outshine him. I’ve been careful to introduce myself as “Rebecca—Andrew’s Mom” at our recitals. I’ve asked Andrew many times if he thinks it’s weird that we “do” piano together. He’s said no, every time.

For the past couple years, we’ve had back-to-back lessons at Theresa’s every week I’ve been healthy enough to show up. We’ve participated in six recitals together. We even convinced Jay to get up and beat on a drum to accompany us in a duet we played for the “Family Fun” recital. Playing the piano—at home during practice sessions, for lessons at Theresa’s, and on the grand piano in the space Theresa rents for recitals—has become more important to me. Music stretches me, and yet it soothes me. Hearing my improvement after playing the Suzuki adaptation of Bach’s Minuet in G Minor roughly seven million times is more satisfying than I can explain. Perhaps because much of my life feels wildly out-of-control when it comes to the big-ticket items like working and parenting, I get an extra kick out of exerting my will on Schumann or Beethoven.

I want Andrew to experience this same confidence boost that I get from chipping away at a tough song. It works for me, so I want to transfer the lesson to him. But he doesn’t want to work on piano songs right now. In truth, he’s never been the world’s most enthusiastic practicer. I’ve created about 35 different formats of practice charts to keep Andrew motivated. I’ve flat-out bribed him some months. A couple times I’ve said, “Practice five times a week for the six weeks until the recital and daddy and I will get you a big Lego set.” That one works nicely, but we can’t afford to go to that well too often.

And Andrew has become even more recalcitrant about practicing since I’ve had to scale back. To be honest, I hate making him practice. He already lacks so much control in his life, and he’s been struggling with my most recent setback. He’s asked many times in the past few weeks variations on the theme of “What’s wrong with your hands, Mommy?” and “What are the doctors doing for you?”

Mastering the fingering of “Lightly Row” and then memorizing the piece isn’t doing it for him. And I can’t bribe him into deriving something essential from piano. That has to come from within him.

I want piano to tug at Andrew’s soul, like it does mine. I muddle my way through complicated songs, struggling what they require of me. When I find a clear path deeper into the music, it feels like I’ve grasped something ineffable and essential. I catch myself practicing chord fingerings on the bed-spread while I watch television with Jay. I mull over minor chords, and fiddle with slightly atonal ones. “Do I like these notes, the way they uncurl inside me all day long?” I do.

But Andrew’s heart isn’t in piano now, just as my arthritis-ridden joints aren’t. This makes me sad. I’m not giving up on either the boy or my hands in the long-term, but for now we’re both taking a break. I’m proud of myself that I was able to ask him whether he wanted to keep taking piano together right now, and to want an honest answer. He said no. Actually, he said, “I’d like a break.” And I’m ok with that. I think that reflects that Andrew and I have enough time and activities together that we don’t need piano in the same way. It does feel like the end of an era, though.

My hope is that I’ll be able to return to practicing soon, and that Andrew will witness the joy and the respite—and the challenge, the growth, the intellectual stimulation, and the emotional connection—music brings me. Maybe someday Andrew will be ready for music again, on his own terms in his own time. I hope so.

Is there something important to you that you’ve been forced to give up or ease up? What have you given up trying to make your child care about?

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Holly Jolly?

December 16, 2011 at 12:57 pm (Uncategorized)

What should I get my niece for Christmas? How many Lego sets should Andrew get? Do I wrap them here, or bring them with me to my family’s celebration in Alabama? How can I find time to shop when I’m getting my infusion meds today? What can I get as stocking stuffers for Andrew? For Jay? Should we celebrate Hanukkah before or after we leave?

This litany of to-dos and worries—all of them trivial—kept me up until the middle of the night. At some point shortly before dawn, I finally convinced myself to “STOP!”

Now I’m waiting to get my monthly dose of chemo and TNF inhibitor. It’s a good thing I’m back in the chemo room before Christmas. I’ve written about how special a place the chemo room is before. But I’m grateful to be here today for a more melancholy reason. One of the women I’ve had personal and intense conversations with for the past couple of years when our treatment days overlap is here. We know each others’ family dramas and disease sagas. She has been battling cancer, first breast and now brain. She isn’t here for treatment today—just to see the doctor about pain management strategies. He’s stopping her chemo and radiation because he can’t stop the cancer. She said she wants one more Christmas with her family. Her teenaged and grown-up children are gathered around her here today. They bring her cookies and coffee. They are talking about movies. “We should stream the Englishman Who Went Up a Hill and Came Down a Mountain,” her husband says. My chemo friend looks like she isn’t falling apart. She is wearing a hat with reindeer antlers.

I have never learned this woman’s name. (We rarely exchange names in the chemo room.) But I think of her as friend, and I feel like crying. But one of the rules of the chemo room is “No crying.” So I try to be glad that I am here today with the opportunity to say goodbye to this kind and strong woman.

I wonder what thoughts have been swirling in her head these past few nights. I bet it’s not about the logistics of gift-giving or wrapping paper. I am ashamed at my descent into triviality.

As I listen to my friend talking with her family across the room, however, it turns out they are in fact constructing a Christmas shopping list. A young woman is recording ideas on her iphone. “Make sure to get a ham,” the husband says. “Hang on. We’re not done with gift ideas,” my friend with cancer says. “What about us all chipping in to get Aidan a wii?”

Once again, the chemo room makes me reassess. It is a privilege and a necessity to dwell on the mundane. I sometimes (especially at 4am) feel ridiculous for fretting incessantly over the minutiae of the holidays. At the same time, though, it would be terrifying and terrible to be forced to stop thinking about what to cook, what to give, how to make others happy – to have all of that crowded out of your mind by the profound that is so often profoundly sad. There needs to be room for both.

Think of my friend whose name I don’t know as you make your holiday preparations. Celebrate the details. Be merry and be well.

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Life’s Rich Pageant

December 14, 2011 at 3:23 pm (Uncategorized)

I’m in recovery from the annual Christmas pageant at Andrew’s elementary school.

I don’t mean to sound snarky. I’ve grown into my Mom skin so much that I now find “Rock and Roll Snowman” and a rap version of “Little Drummer Boy” downright endearing, especially when the performers are wearing Santa hats too big for their little heads.

No, my recovery process is a physical one. Sitting in metal folding chairs in the school gym for nearly two hours did some damage to my sarcoidosis-induced arthritis. At least I know there’s a good reason for all my aches—and all the squirming I had to do to make it through the program. At a doctor’s appointment yesterday, I learned that the sarcoidosis-related arthritis in my joints is indeed back after a couple years’ hiatus. The latest X-rays of my hands, ankles, and knees are showing clear signs of arthritis and joint damage. My team of doctors is scratching its collective head about what to do about this. There are no exciting new sarcoidosis drugs on the market (or in the pipeline). The cocktail of immune suppressants I’m on is pretty much the best they can do. The only hope for now is that the kick-ass (or ass-kicking) dose of prednisone I started last week will—at some point—do its thing and reduce the inflammation and disease progression.

I got this bad news yesterday afternoon. I really wanted to freak out, take to my bed, have a nervous breakdown, or something. But Jay was in an all-day meeting. Andrew needed to get picked up from school. I had promised to go to a school board meeting. The recycling needed to get to the garage. I needed to deal with holiday presents. There was dinner to get on the table (even if it was reheated pizza). Towels waited in the dryer to get folded. The cats certainly weren’t copacetic with giving up a feeding for my mental health. And there was a school Christmas pageant to attend. Andrew was excited for me to be there. When he couldn’t fall asleep last night, he said, “Mama, I just can’t wait for you to see the wonders of our show.” If I had been half-contemplating flaking on going, this comment banished any lurking inclination to stay in bed and feel sorry for myself.

It hurt like hell to get out of bed this morning. All my joints freeze up in the night. But I didn’t fall over. I drank my tea, took a shower, and even managed to mascara my eyelashes. It took me an extra few minutes to lurch, Frankenstein-like, into the school, but I slid into a folding chair next to Jay at exactly 10:00am, when the program started. We listened to “The Little Snow Flake” and “Sleigh Ride.” We smiled at the kids we know from YMCA sports and my volunteering in the school. We marveled at how big the 5th graders seem, and how little the kindergartners. Through it all, I squirmed in my chair. I rearranged myself. I squeezed Jay’s hand whenever it got a little overwhelming. I’m sure the people sitting around us thought I had ADHD.

Andrew looked proud as he walked to the stage with his class. He searched the crowd, squinting through the bright lights, to locate Jay and me in the audience. When he did, he relaxed a little. He sang with gusto. He kept up with his classmates with the clapping, smiling, ear cupping, and other gestures that accompanied the music.

I wanted to thoroughly enjoy this extravaganza of song, timed hand motions, and holiday cheer. But I hurt way too much to kick back and have fun. I started to get sad–“Poor me. I can’t fully appreciate Andrew’s 2nd grade songs.” But I caught myself. Parenting isn’t always about liking the process—or even feeling capable of enduring the process. It’s about showing up for your kid, with your worries and aches in tow (but hopefully temporarily out of sight). Looking around the dimly lit gym at all the other parents’ faces I saw boredom, tiredness, and anxiety. Sure there were a few of the super Moms who looked lost in rapt glee and total enjoyment (and probably already have their holiday shopping done). Most of us, though, clearly had our share of reality sitting with us.

I don’t think I could survive in Chronic Town without Andrew. I would veer towards narcissism and self-pity. He keeps me grounded in what needs to be done—this day, at this moment. He pushes me to show up to the life I have and to focus on living it, even when I’d rather not, or when I’d rather resort to histrionics.

I made it through the pageant. Sometimes that’s enough. There are days when reveling in the beauty and complexity of life around you just isn’t possible. There are mornings you just have to gut it out. This is life in Chronic Town. This is life.

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Genre Busting

December 12, 2011 at 4:08 pm (Uncategorized)

I was stuck—emotionally and physically—a few days ago. I ached from the sarcoidosis swelling my joints. I hurt too much to get out of bed. I was also the emotional equivalent of car sick. A blast of prednisone to treat the disease riled up my anxiety. I swirled and spun, feeling helpless, amid repetitive thoughts.

If only I had felt well enough to channel that agitation into something constructive. I could have figured out a system for storing the eight billion Legos strewn about Andrew’s bedroom floor. Or I could have unpacked our garage full of boxes that have been festering since we moved over a year ago.

But I didn’t. And I couldn’t. So I lay in bed and worried. If the sarcoidosis is flaring up in my joints will it also get worse in my brain again? What if I can’t get out of bed tomorrow? Is Andrew having a difficult time with my setback? Is Jay able to cope with me being sicker?

Thanks to the brain-revving, stomach roiling miracle that is prednisone, I was able to worry about all these—and many more—intangible what-ifs all at the same time. It was a quantum leap of worrying.

It really sucked. Being the Einstein of anxiety has its drawbacks.

If this had happened a year or two (or three or four or five) ago, I would have tried to interrogate the worries. I would have followed each errant thread of worry back to its tangled source. I would have pulled harder and faster at each skein, not noticing that in my frenzy of “self-discovery” I wasn’t actually creating order. I was just driving myself crazy in a pseudo-rigorous fashion. This was how I “dealt” with bad medical news and bad days.

Luckily, my husband took the day off from work and helped me not to repeat this pattern. After lying next to me in bed and feeling the tension steaming off my skin for a few minutes, Jay suggested we watch television. It felt so decadent to consider an afternoon of mindlessness. Shouldn’t I try to write? Or read? Or think myself into a puddle?

“Well, if you think it’s a good idea…,” I said hesitantly.

“It’s a great idea,” Jay said, already powering up the various audio-visual components that make up television-watching in the 21st century.

Jay loves television. This made for some interesting relationship dynamics when we first got together. When I met Jay, I was at the zenith of my intellectual snobbery. I never watched television. I read serious books. I watched serious movies, preferably ones in black and white, with subtitles, and as few conventional plot devices as I could tolerate. Enjoyment had nothing to do with entertainment. Obscurity and intellectual rigor were what I sought.

Fifteen years later, to make a long story short and rely on one of those conventional plot devices, I have come to embrace good television, especially when I can enjoy it with Jay. We’ve watched more hours of TV than I’d ever admit to among my old, intellectual friends. This past year we’ve made it through the entire series of Battlestar Gallactica, Prime Suspect, The Wire, and Justified, along with a good number of episodes of The Closer and Southland.

Even after all this television-watching, I still struggle with feeling lazy or lame about zoning out. I usually have to be convinced to try a new show, like Battlestar Galactica a few months ago. “It’s science fiction,” I said, not enthusiastically, when Jay proposed it. “You’ll like it,” he said. “It’s about the post-September 11th world and role of technology and questions of global power.” I sighed and acted like I was still pondering it. But Jay’s learned a few things in so many years together. Tell me it’s not really about sexy robots but an exploration of global politics—pander to my ingrained intellectual snobbery, in other words—and I’ll watch long enough to get hooked by the sexy robots.

I was a little surprised, then, when Jay proposed we watched Parks and Recreation on my achy, anxious day. “That’s a…comedy,” I said, as if Jay had just suggested we clean toilets, not snuggle on an overcast winter day. I’ve tried science fiction, and vampire slaying, and police procedurals. But comedy? That had to be the “vast wasteland” television is reputed to be.

“It’s not that kind of comedy,” Jay said, having heard once or twice during our years together about my loathing of all laugh-tracks and cheap vulgarity. I nearly dumped him when he confessed in our first weeks together that he’d been known to watch Cheers late at night to wind down after a long shift waiting tables.

“I’m not in a comedy kind of mood,” I said. I was hurting and worried and feeling deeply out of control. I was in more of a Discrete Charm of the Bourgeoisie sort of mood. If pressed, I’d settle for Battleship Potemkim. At least that’s what my busy brain was telling me.

“You’ll like this,” Jay said.

“Maybe later…”

“You didn’t want to watch Buffy the Vampire Slayer. I said you’d like that, and you did.”

“But that was dark. And well written. I like dark and well written. It wasn’t a…comedy.”

Jay spent the next five minutes reminding me of every show he’d recommended that I’d at first eschewed and later loved. He wore me down.

“Fine. I’ll try one. But it better not have a laugh track.”

Fourteen episodes of Parks and Recreation later, we tore ourselves away from Netflix on demand. I had laughed until I couldn’t breathe, gotten close to crying, had fallen in love with the show’s crazy cast of characters, and—unbelievably—hadn’t been aware of pain or anxiety the whole time.

“I knew you’d like it,” Jay said, as I complained about having to leave the world of a small-town Indiana parks department employee.

“It’s crazy. I like a…comedy,” I said. “What does this mean?”

Jay was nice not to gloat too much.

We’ve watched a lot more Parks and Recreation since then. It’s enjoyable, mind-diverting entertainment that never crosses into mind-numbing territory. It’s funny, yet it never jeers at its characters. It has an inner sweetness, but isn’t saccharine. It somehow embraces both cynicism and idealism, and makes it possible to believe that two people on opposite ends of this spectrum—and at two sides of the greater sociopolitical divide in America—can still work together, be friends, and help each other. (And it doesn’t have a laugh track.)

What makes the show compulsively watchable—and so emotionally real—is that it’s not just a comedy. It unfolds in the framework of a comedy—22 minute episodes (without commercials), punch lines, and more humor than not. Yet it busts open the genre. It doesn’t use those sickening laugh lines to cue what’s funny for you. It lets you decide. It tackles complex themes and relationships. It trusts that you’ve paid attention to past episodes, that you won’t throw a rock at the screen if an episode doesn’t provide perfect closure. The characters have to deal with real life. They’re trying to get things done in spite of bureaucracy and red tape. They’re trying to be true to themselves and each other even though their political and personal lives are different.

Parks and Recreation
is a great comedy in the same way that The Wire or Prime Suspect or Southland is a great cop show. They take the framework and the conventions of the genre and then blast them all to hell. I love that.

This concept of genre-bending (or busting) was a topic at the amazing writers’ conference I was able to attend in October. It used to be that “commercial” and “literary” fiction were separate realms. If a book sold well, the critics would hate it. If a movie boggles my brain and is arty, then it must be “art.” If a television show makes me laugh, it must be “bad.” (This is my intellectual heritage.)

I learned at the Surrey International Writers’ Conference, however, that the publishing and television industries have come to recognize this type of dialectical pigeon-holing for the nonsense it is. A new breed of books—readable, best-selling literary works—are capturing millions of readers—The Help, The Reliable Wife, Cutting for Stone, Water for Elephants. And “genre” writers (those once confined to the conventions of romance, science fiction, fantasy, mystery and thriller books) aren’t content to be caged in the narrative formulas that editors and readers sometimes try to lock them in. Diana Gabaldon’s Outlander books, for instance, transcend the “romance” label and are just compulsively readable and well-told stories.

All this pondering about busting through literary and television conventions got me thinking about my own life and the limitations I’m accustomed to imposing on myself. Living in Chronic Town is in some ways a genre existence. Persevering with a chronic illness isn’t too unlike trying to tell a meaningful story within the rules of, say, a cop show or a comedy. There are certain aspects of the genre I can’t do away with. I’ve got to deal with lots of medicine, more doctors’ appointments than I’d like, chronic pain, and anxiety about my future. Similarly, Parks and Recreation has to figure out narrative flexibility in a 22-minute slot that requires plenty of humor. Can I make like Amy Poehler and bust out of my genre? Can I redefine chronic illness—this day? Can I laugh through anxiety and pain?

What’s next, Chronic Town…the comedy?

Have you busted through your own internal genres lately? Or moved around some heavy mental furniture? How do you reframe your story and learn new ways to enjoy your life?

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Pains and Aches

December 6, 2011 at 4:08 pm (Uncategorized)

I just got some bad health news. It’s amazing to me that after nearly eight years in Chronic Town I still get shocked and overwhelmed and sad when I suffer a setback. I suppose it’s a testament to my capacity for hope (as well as my steadfast commitment to denial.) Nevertheless, it sucks.

A few days ago the joints in my left hand started aching. I thought perhaps I’d slept on the hand funny. Then my other hand started hurting. Then my knee. By the early hours of last night—when I lay awake, in pain, until 4 AM—it felt like every joint in my body was aching and thrumming.

I knew that the sarcoidosis was flaring back up in my joints, but I didn’t really want to admit it to myself. Nevertheless, I forced myself to go to the doctor this morning. He ran some labs and then sat me down. I was devastated when he told me that I have very suddenly had a major disease flare-up. My blood work was a little weird at the end of October, but it looked like that was being controlled by my host of meds, and two weeks ago it was about as normal as it gets. Today, all the markers the White Coats use to measure inflammation are way, way up. And they’ve rocketed back up despite my persevering with the monthly infusions of Rituxan and Remicade, and me taking my heavy-duty daily cocktail of those other immunosuppressing big guns, CellCept and prednisone.

So now there’s a new plan. Well, actually, it looks a lot like an old plan – one I was very happy to have left behind me (or so I thought). Think of it as a prednisone bomb – back up to 80 mg. of prednisone a day from the 10 mg/day I had worked myself down to. If you’re one of my readers who’s been on (or is on) 80 mg/day of what one of the White Coats calls the Devil’s Wonder Drug, you’ll understand why I’m daunted. If you haven’t experienced the mood swings, bottomless hunger and exhausted jitteriness of life on high doses of prednisone, count your blessings. The doctor also x-rayed the most painful joints to make sure the disease isn’t damaging them too much. He’s going to call my sarcoidosis specialist in Ohio, too, and if I’m particularly lucky maybe learn there’s a brand-new, symptom-free treatment for the rheumatic symptoms of sarcoidosis. Otherwise, I’ll have to stay up on the prednisone for the time being.

I feel like I’ve been whonked upside the head with a very large rock. The speed with which this disease has (again) moved through my body is terrifying. To be honest, it’s the utter rapidity of this flare-up that has prompted me to write this today, even though my fingers ache on the keyboard and my mind is buzzing in ever tighter circles with the bad news and the huge hit of prednisone. Life changes so damn quickly—even when you think you’re prepared for bad news and practiced at living with a chronic illness. But the same radical transformations can happen to all of you. I hate to be preachy and sentimental. There’s enough of that in the world. Yet I have to say this. Be aware of the wonders and the joy and the possibility in your life. It’s so easy to take for granted. And it’s also so easy to lose.

Send me your prayers, healing thoughts, and good vibes. I need them.

As always, thanks for reading. By accompanying me on this journey, you all make it so much easier.

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Rediscovering Me

December 5, 2011 at 12:55 pm (Uncategorized)

Something strange happened to me the other night. I actually enjoyed being in my own skin.

I went for my first ever soak in our hot tub. I lowered myself dubiously into the vat of boiling and bubbling water. I emerged, steaming, like some kind of post-modern Venus. In between, I hung out in my own body.

Most days, I don’t even think of my physical self, except when I walk by a mirror and do a double-take. “Really? That fatso is me?” Usually, though, I regulate my mirror crossings, and have imposed a rigorous lock-down on body thoughts. When I soap my limbs in the shower, I focus on getting a good lather, not the flesh beneath. I listen to a book on my ipod when I get dressed in the mornings. This helps shut down the self-loathing that would otherwise occur when I encounter my pants size.

I’m being brutally honest here. It hurts to write, and I’m sure it will hurt a little to read this. But I think we women of middle age don’t often think or talk about how we feel about our changed and changing bodies. We live in a culture that glorifies youth—and firm flesh and wrinkle-less brows—that aren’t possible once you’ve crossed out of your twenties without the intervention of surgical or cosmetic procedures. It’s a tyranny of appearance. The billions of dollars of cosmetic ads don’t concern themselves with holding onto or regaining the function of a youthful body. They’re all about looking young, looking thin, and looking beautiful.

I hate being fat. There are some very good reasons why I am 100 pounds heavier than I’d like to be. Nearly 8 years ago I was diagnosed with sarcoidosis. I didn’t get the friendlier version of the disease that spontaneously goes away after a few months. I got hammered with chronic, systemic sarcoidosis—a disease that has infiltrated nearly every major organ (and a host of minor ones too). I had just given birth to my first child when I was diagnosed. I was obsessed with losing the final 10 pounds of baby weight, when I got put on high doses of prednisone. Prednisone is a life-saving drug. It is also a nightmare of a drug. One of its main side-effects is weight gain. Fortunately, I’m not still on 80 milligrams of prednisone daily, as I was for a couple of long and difficult years. But I’ve never once been off prednisone in the last 8 years.

Before I got sick and before I had a baby, I was athletic. I was a national-class cyclist as a teenager. After I hung up my racing wheels, I became an avid hiker, gym rat, recreational cyclist, and fitness buff. I loved being fast and strong. I loved riding my bike for fifty, seventy-five, a hundred miles—and sprinting at the end. I loved bench pressing and leg pressing. I loved being able to go for an hour at the highest level on the Stairmaster. I loved hiking up mountains, carrying a heavy pack with everything I needed for a week in the backcountry on my back. I loved laying in bed and flexing my leg muscles and watching my quadriceps ripple beneath their cover of skin. I loved being absurdly flexible. I loved my body and all it could do.

As I gained all that weight on the prednisone and as I got sicker, exercise became more complicated and more difficult and more painful. Before I got my defibrillator implanted last year, my cardiologist would furor his thick brow whenever I asked about taking up exercise again. “I suppose it would be OK,” he said tentatively. “As long as you keep your heart rate low. But we just don’t know about the relationship with heart stress and cardiac events in people with cardiac sarcoidosis.” Cardiac events are White Coat-speak for major heart attacks. I had cardiac sarcoidosis. The prospect of dropping dead on my recumbent bike somehow leached any interest I had in regaining fitness. Then the sarcoidosis entered my joints. The disease caused spontaneous stress fractures in my feet. I was in a cast for half a year. Even my unbroken bones ached and throbbed whenever I tried to take up exercising again. I’m sure if I had pushed myself to try a new kind of exercise like yoga or Tai-chi, instead of forcing my new heavier body into my same old routines, I might have had more success. But I was in chronic pain. I was frightened. Everything else in my life had changed. Taking up a new movement routine was just overwhelming. By the time the sarcoidosis moved into my brain and my cranial nerves and caused debilitating vertigo that kept me literally bedbound for two years, I had already given up exercise and the pursuit of physical strength.

Since I’m being brutally honest here, I’ll add that I also did a lot of overeating. I would wait until Jay and Andrew were asleep, and then cruise through the refrigerator in the darkest hours of night, polishing off pies and cakes, cold pasta, leftover steak. I would eat several big bowls of the sweetest cereal I could find in our cupboards. I would eat until my stomach hurt and it felt like I couldn’t breathe. I’ve learned since then that this was “emotional eating.” I was eating to stuff down feelings, to assert a sense of control, to manage my anxiety. I also believe that I was eating because it was the only physical pleasure I had left. The rush of sugar, the crunch of pie crust, the slippery warmth of fats on my tongue made me feel alive.

My body was no longer a source of strength and joy. It didn’t carry me up a mountain, or fly me down a hill. Worst, it was disease-ridden and alien to me. Hidden from sight was this lethal sickness that moved through me like an insurgent force, destroying the very body that contained it. I spent a lot of time thinking about how to eradicate the disease. I subjected myself to every test my doctors dreamed up. I wanted access. I wanted to know what was happening within the subterranean folds of my liver, my brain, my skin. And I wanted to kick the shit out of this disease that was so effectively fucking up my life. I would have swallowed rat poison if some White Coat had told me it would help.

In my forthcoming memoir I describe this process of part-alienation and part-obsession with my diseased body as the creation of my Medical Body. All those years of getting poked and prodded, measured and observed, treated and tested, changed how I thought of my own flesh and blood. It became easier to talk about my own body in the same distant and medicalized language of the technicians and White Coats who tested me. Instead of saying, “I’m scared about dying,” I quoted scientific journals about the “survival rate” of “people with cardiac sarcoidosis.” Instead of saying, “I’m really hurting,” I could rattle off my blood sedimentation statistics and the neurologist-speak number of the cranial nerve that was causing me debilitating headaches. Instead of hoping to get well, I swallowed everything the doctors gave me. I used to joke that it was time to amputate my head. I’m not sure now this was all humor.

Through all of this I’ve muddled along. I’ve bought bigger pants and avoid mirrors. I don’t look too closely at my body or feel it too deeply. Turns out, this is a really crappy way to live, especially for a writer. Shutting off connection with your own body doesn’t make a good starting point for exploring truths and writing what’s real. Plus, it makes me a lousy role model for my son, who I’ve noticed has inherited his mother’s food-wolfing and use of sweets as a pick-me-up. If I’m not going to do better for myself, I’ve got to for Andrew.

Like all big changes, my move towards rediscovering my body hasn’t happened all at once and isn’t often planned. It’s not like I’m scheduling quality time in front of a mirror. But I am—more often than not—trying to push myself a little when it comes to caring for my body. Instead of always trying to lose weight, I have shifted (with some difficulty) to thinking of my relationship with food as being not about counting calories but about eating to heal and nurture myself with healthy foods that provide energy. When I’m not hurting too much, I’ve been pedaling gently on my exercise bike for ten minutes. I’m contemplating trying out the yoga studio near my office. In the shower, I’m paying attention to the warrior body beneath the soap suds. My body has endured so much, fought so valiantly, persevered through pain and illness. It deserves praise and love – not recrimination for not being what it once was.

Still, it’s not an easy process for me—to think of my self as innately strong and lovable, rather than because of how much disease I can beat or how many miles I can ride. So, the other night when the sarcoidosis in my joints began to act up (an unfortunate new development), my inclination was to take a pain pill, listen to a trashy book, and forget about my hurting body. But I got this quiet yet insistent feeling that I should soak in our hot tub. We’ve lived in our “new” house for over a year, but we’ve only recently gotten the hot tub that came with it up and running. It was late—and snowy and cold. Jay was nestled beneath the blanket. Andrew was asleep. Did I want to venture outside? What was I hoping to achieve? My hand went toward the pill bottle. I could have a bowl of cereal. No, I would try this.

Jay helped me heave the heavy cover off. It’s only two steps from our bedroom door, but they were snowy and slippery. I was shivering convulsively by the time I climbed into the tub. It took a couple of minutes for my body to recognize that it wasn’t cold anymore. Then the warmth flooded through my skin, worked down into my muscles, and into my aching and brittle bones. My throbbing joints released their pain for the first time in days.

The warm water lifted and held my 100-pound overweight body. I could have weighed a thousand pounds and still I would have been weightless in the strong, open arms of that water. I floated. I sighed. I located the button to turn on the jets and pressed it. The water roiled and snaked around me. I lowered my aching neck to one of the jets and let the water pound out the soreness. It sounded like the surf.

It took a few minutes for me to get brave enough to turn on the interior light on the hot tub. Here I was, alone on my deck under a moonless sky in the darkness, and still I felt shy. I hesitated. I pressed it, and then quickly pressed it off. But I liked the small taste of the weird green light I’d seen before slamming it off. So I turned it on again. My big white body was lit up with light that looked like concentrated fireflies. I bobbed and floated in this primeval light. I was big and I was buoyant.

I stayed out there floating as the moon rose and glinted off my expanse of skin and the snow. I shimmered along with the water and the earth and the sky. There was no room for shame beneath that giant sky. There was nothing to do but look at myself and look at the sky. I liked what I saw.

As we approach the New Year, how are you feeling about your own skin and bones? Do you like what you see?

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Tired. And Cranky.

December 1, 2011 at 3:36 pm (Uncategorized)

I am writing this today even though I am so tired and feel so lousy that tapping the keys hurts. I am not exaggerating. And then I am going to force myself to post this, even though it’s too short, too trite, too tired, too imperfect. I’m trying to get past my Inner Tyrant, who doesn’t tolerate anything short of her idea of perfect. I’m also realizing that if I truly want to write about what it’s like in Chronic Town, I’ve got to get a few words down on the bad days, when turning over in bed is too much work.

There is no tired like the kind you get in Chronic Town. The exhaustion that chronic or serious illness brings with it is a distant, barely-related and much more overbearing cousin to the fatigue of the healthy. The tiredness of illness is your body’s way of saying, “I am sick. I am broken. I am hurting. And I will not let you pretend everything is fine.” It is a tiredness that sleep does not sate, that caffeine cannot counteract, that willpower cannot overcome.

I’ve lost months—maybe years—of my recent life to this tiredness. I’ve tried to fight it. I’ve tried to appease it. I’ve been sad at it. I’ve been mad at it. Today, I’m too tired for full level rage, so I’m simmering along, cranky at it.

It doesn’t matter what I feel about this tiredness. It remains—above and below my frustration and fury—like some cold, immutable god. There is nothing to do but crawl back into bed, hope it passes, and sleep.

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