Fun? What’s That?

May 28, 2011 at 5:09 pm (Uncategorized)

I did something strange last night. I had fun.

Here’s what happened. After our seven-year old son Andrew was tucked into bed and Jay was snoring with the New Yorker on his face, I decided to draw. When we were in Portland, Jay bought this very cool book that gives easy instructions on how to draw mythical creatures, like dragons, Quetzalcoatl, Greek gods, and Thor. Andrew, is intensely interested in these things. He’s reading a series of books that involve the Greek gods. He’s also a blossoming artist, so the drawing book seemed like the perfect fit for him.

As all you parents out there know, predicting what your kid will like—as opposed to what you think he or she should like—makes reading tea leaves look easy. It’s not that Andrew didn’t like the drawing book. But he was decidedly whelmed. I, on the other hand, was enchanted at the prospect of drawing Medusa. So, last night, when the house exhaled with the sound of Jay and Andrew’s sleeping, I found the book, paper, and a pencil, and started to draw.

Let me be clear: I don’t draw. My mother is a talented artist, and I’ve always admired, respected, and envied people who can make a recognizable reproduction of a slice of the world on canvas or paper. I like viewing art, and even did well in a college art history class. But my talents have hewed to the written—not the visual. Drawing a straight line or a stick figure has vexed me. Rather than push the boundaries of my definition of myself as someone who doesn’t draw but who writes, I’ve reified them, fortified them, and then militarized them.

Then I had a kid—a kid who seems to have inherited his Grandmother’s gift of making something beautiful with a few lines, a kid who wants company while he doodles, a kid who won’t take “No, I don’t do art, I do writing” as an answer. “Draw with me Mommy,” is something I hear a lot. I hate disappointing Andrew. I worry that my sickness has robbed him of too much of me, so I can’t arbitrarily reject an activity that I’m physically capable of doing.

In the past few years, I’ve learned that I can draw a stick figure—and sometimes a little more. Even more valuable, I’ve grasped that it doesn’t matter—if the lines in my drawings are crooked, if my people look like rabbits and my rabbits like raccoons, if it’s all “wrong.” No matter how shoddy my drawings are, Andrew always studies them and says something like, “Good job, Mommy” before lowering his head back to his own page. Somehow that kid pushed me to accomplish something that years of therapy, loads of self-help books, and hours of “positive thinking” couldn’t. When I’m drawing with Andrew, I’m able to let go of the gnawing, nagging perfectionism that dominates too much of my life and leeches the color from activities I want to be “fun,” but instead become slogs to achieve something adequately “good.”

Until last night, though, I’ve never drawn something on my own. I’ve kept it as one of those mother-child activities. But I had a blast drawing first a grumpy looking troll and then a regal Quetzalcoatl, the feathered serpent god of the Toltecs and Aztecs. The drawing book broke the process down into easy steps that even I could follow. I lost all sense of time as I penciled in the troll’s long toe-nails and the snake’s plumage. I turned the drawings into “good morning notes” for Jay and Andrew to find at the breakfast table. I was having such a good time that I was a little sad when I finished getting the drawings down on paper, but I also felt refreshed and creatively “re-charged.” In other words, I had fun.

This got me thinking about fun. Why was the experience of making these sketches so rewarding? I’ve believed that the writing I’ve chosen as my profession is something I find fun. So why don’t I feel a similar sense of being caught in a river of fast-moving creative juices when I sit down to write most days? And why don’t I find my chosen recreational activities—reading, listening to books, writing blog entries, playing piano, exercising, watching television with Jay, and cooking—half as fun as my night of drawing?

I think it’s partly because I tend to take everything way too seriously. It’s the dark side of the perfectionism that pushes me to do things well. It can cause me to dwell not on the process of chopping vegetables to choosing words, but instead on the end product, be it a “good enough” dinner or essay.

But it’s more complicated than perfectionism run amok. I think my lack of fun is related to living in Chronic Town. Sarcoidosis steals so much of life. The exhaustion many of us with chronic illnesses contend with means that I sleep away half my life—and then I barely feel like I’ve got enough energy to make it through a day. The surgeries, chronic pain, all-day drug infusions, and constant medical appointments erode even more of my life. With so little time and even less energy, I suppose it’s no mystery why I don’t devote more of my limited resources to activities like drawing. It’s logical that I spend my finite energy on the activities that give back to me: work and my relationships with Jay and Andrew.

I’ve written before that we all live in Chronic Town, whether or not we’re sick with a chronic illness. Plenty of people who aren’t sick read this blog. I think it’s because the topics I write about—trying to live fully in a body that’s falling apart, living with an awareness of mortality, contending with ever-changing variables, searching for balance—are what life—not just sickness is about. We’re all trying to make time for fun in lives that are crowded with obligations. Women, especially, are at greatest risk to become the caregivers who make sure everyone else in the family is able to have fun—expect ourselves. We drive the kids to art classes and soccer camp, cook nutritional dinners so the family will have the energy to pursue their passions. We work to make others happy. But what’s left for us?

I wish I’d been able to experience motherhood without the long shadow of illness. I got diagnosed with sarcoidosis when Andrew was only three months old. As he’s grown, the disease has grown too, in its insidious way. My guess is that some of my struggle for time and autonomy and my own space to work and have fun aren’t the dark side-effects of illness, as I often think of them, but are instead the normal consequences of rearing a new human being. There’s nothing I can do about the timing of sarcoidosis, but I know I’m lucky to have Andrew, lucky to have time with him, lucky that I can learn from him.

I’m not giving up my responsibilities as a mother so I can have more fun. I’ve fought too hard to beat this disease that I’d even consider ceding my obligations to Andrew. I’m also not abandoning the hard work I’m doing to return to work as a writer. I’m not shutting down this blog either. Nor am I planning on quitting spending time with Jay. I’m proud of my family, my work, on the many roles I’ve accepted—and I won’t give them up.

But I am going to draw more, play the piano more, color more. For a few minutes here and there, I’m going to make something beautiful that is mine and that exists for no reason other than being beautiful and mine.

In other words, I’m going to have fun.

Permalink 6 Comments

Scheduling on the Edge of the Abyss

May 21, 2011 at 5:34 pm (Uncategorized)

I had a busy week planned. On Monday, I was going to meet with Marianne to discuss teaching a creative writing class together. Tuesday I’d spend writing a new blog entry and doing research for my next writing assignment. Wednesday evening was my writers’ group. Thursday would be the day I started exercising again. Friday I was slated to have lunch with my good friend Martha and afternoon coffee with another friend.

I didn’t make it to a single appointment—even to my desk in the room next to my bedroom.

I slept fourteen or sixteen hours every day this week. Yet each time I awoke feeling exhausted. It’s dispiriting to sleep more than half your life and then not even feel rested. When I wasn’t sleeping, I was still stuck in bed. My unholy trinity of neurosarcoidosis symptoms—vertigo, headache, and periodic blindness—kept me horizontal. I couldn’t even manage to get out of bed to join Jay and Andrew for dinner. It’s lonely, boring, frustrating, and crazy-making to be sick and tired…and not see an end to it.

There are good reasons I’m feeling punky. I just returned from a 12-day, 2,000-mile road trip with Jay and Andrew to Portland, Billings, and Roundup. Jay had work obligations in Portland and Billings, and I was happy to use these as an excuse for a family vacation. I knew the trip would take its toll, but hadn’t anticipated just how thoroughly it would thrash me. My trip to Iceland in February hadn’t wasted me like this. Maybe the difference was the two nasty infections—one in my sinuses, the other an abdominal abscess—I just finished fighting. Or maybe I’m not able to bounce back from my monthly infusion of a chemotherapy drug called Rituxan.

This is life in Chronic Town—casting around for an explanation of why you feel so shitty.

But that’s not what I want to write about today. I want to write about scheduling on the edge of the abyss, or what it’s like to try for a normal life in Chronic Town. In some ways it would be easier if I felt uniformly poorly every day—not that I’m asking for this fate. But if I knew I’d feel crummy, I wouldn’t try so hard. I wouldn’t keep making plans in the hope that I’ll feel well enough to make an appointment. I’m too stubborn to give in to sarcoidosis and to stop trying to live as normal a life as I can. I won’t give up trying to work. I won’t give up my friends. I won’t give up my family. So I schedule as if I’m absolutely going to feel well enough to plan out a writing class, come up with words for an article, have the pep to listen to the details of my friends’ lives. I don’t keep accurate enough records to assess how often I fall short of the very ambitious goals I set for myself in my calendar. Do I make it 50 percent of the time? Probably not.

I’m lucky to have friends who understand that any date they make with me is likely to get canceled, shortened, or postponed. At least, I hope they understand. I’ve never wanted to address the issue because that would mean acknowledging the reality that my ambitions and hopes outstrip my capacity—that I can’t keep up with myself. Looking them in the eye—and saying “You know, it’s likely I’ll flake on our lunch date/writing group/dinner because I’m too sick and too tired to be able to make this. Are you OK that I’m hoping for the best case scenario in terms of my energy and symptoms, but odds are that we’ll have to reschedule?”—would mean accepting this dynamic within myself. And I’m just not ready to do that. It’s the elephant (in drag, balanced on a rolling pin, dancing the polka) in the room.

I guess my overly-ambitious scheduling is a way for me to keep intact some of my denial of how much sickness has changed and limited me. If I make my calendar look like an approximation of a normal freelance writer’s, doesn’t that mean I’m still an approximation of a normal freelance writer? I’ve had to let go of a lot already. I’ve tried graciously to stop thinking of myself as an athlete. I’ve accepted that I need help in the house and help caring for my son. I can’t quite make myself stop believing that I am a woman with appointment to keep and people to see. What would be left of me if I were to wipe my calendar clean? A more accurate question is, who would I be?

It would be easier in many ways to stop trying so hard. It causes me stress and anxiety every time I realize that I won’t be able to drive across town to see Marianne or pull myself together to see Martha. I hate being a flake. I hate cancelling, inconveniencing others, inflicting my woes on the world. If I bit the proverbial bullet and assessed realistically how much energy I have to share with the world, I’d feel less guilty. If I weren’t dragging a heavy sledge of guilt at having to cancel meetings, would I feel better? Quite possibly.

But there’s another variable to the equation. It’s in that seemingly simple statement “if I assessed realistically how much energy….” How much energy I have changes from week to week, from day to day, from hour to hour, and sometimes even from minute to minute. There are some days when I should feel flattened by fatigue or sickness, and yet, I magically have the stamina to do more. Then there are weeks like this one, when I’ve done nothing but sleep and rest, and I still can’t summon the energy to brush my teeth. There’s neither rhyme nor reason to the difference. I’ve tired myself out trying to divine some kind of correlations to my wildly fluctuating energy levels, some pattern in the chaotic warp and woof of chronic illness. There are obvious flags—if I don’t sleep, if I really overdo it, it’s pretty clear why I bottom out afterwards. But then there are weeks like this one, when I should be feeling better by Wednesday or Thursday, and I don’t.

If I were giving advice to a friend, I’d still counsel her to keep track of when she’s feeling peppy enough to make an appointment and when she’s unable to get out of bed. “Isn’t it better to know?” I’d ask her. “Then you can make realistic goals for yourself and not feel disappointed every time you have to break a date.” True, true. And yet, I really don’t want to know just how little energy I have on a given day. While it’s more chaotic to plan as if I’m going to feel well—and then fall short—by doing so, I can avoid the awful realization that I’m too sick to live even a pared-down normal life.

The reality is that we all schedule on the edge of the abyss. We live and plan as if—as if there will be a tomorrow, as if we’ll be well enough to notice it, as if we’ll be loved, as if we’ll have work, as if the sun will greet us in the East and the stars will shine in the night sky. We all scratch out lives in the midst of terrible chaos and constant change. We write “to do lists” in the face of war, rising seas, rampaging disease, and storms on the horizon. Can we have it any other way? Giving into the chaos, instead of living in spite of it, won’t abate it.

I’m not ready to give sarcoidosis my calendar. Some day—and I hope not soon—I’ll have no choice but to keep my days empty. But I won’t cede my tomorrows yet. I’m going to keep planning as if I’ll have strength and energy to spare, if not tomorrow, then maybe the day after. It’s all I can do.

Permalink 5 Comments

What Goes Up Must Come Down—At Least in Chronic Town

May 7, 2011 at 10:38 pm (Uncategorized)

I’ve been feeling better.  I’ve also been feeling worse.  This is the vexing paradox of chronic illness.  Everything I wrote in my last few blog entries—that I’m feeling well enough to work again and feeling well enough to travel again—was entirely true.  It’s equally true, though, that I’ve been sick again too.  It’s just a lot less fun to write about vertigo, blind spells, crushing headaches, an infected abscess, and bottomless fatigue.

I want sarcoidosis to follow the trajectory of curable illnesses.  I’ve put in my time being sick, swallowed all my medicine, and followed the doctors’ orders.  So I should get to be well now, right?  I guess not.

This is the reality.  I’m able to work three or four days out of seven.  Then I spend an equal amount of time flat on my back.

I know all of you positive thinkers out there—myself included—are thinking that I should be grateful that I’m able to work at all now and travel anywhere.  You’re right.  Let me tell you, though, that after seven long years of pain and illness, counting blessings gets tiring.

I usually try to hide my grumpiness and frustration.  I like to think of myself as a positive person.  I get two treatments a month at Helena’s Cancer Treatment Center, which means I get plenty of reminders that I could have it a lot worse.  I want to be graceful under pressure and strong.

Unfortunately, when the neurosarcoidosis lands me in bed and nothing can ease the pain or restore my balance, I get awfully lonely.  Yes, it’s nice that I was able to write the day before and it’s nice that I might be able to write again tomorrow.  But it’s hard right now.

When I launched this blog, I wanted to create a place for all of us in Chronic Town.  It’s hard to contend with a bizarre disease that no one knows anything about, and harder still to have friends and family expecting us to get well—pronto.  I’ve tasked myself with writing what’s true here—even if it’s sad and bitter.  I want to write things that you can print out and show to your husbands or parents.  “See, I’m not the only one who is having a hard time with sarcoidosis.  Rebecca feels the same way.  She’s sick of being sick, sick of setbacks, sick of hoping.  She thinks she’s doing much better, and then she gets a flare-up and has to go to bed.”  There you have it.

What’s almost harder than managing my own disappointment at suffering a setback the day after working, is having to manage my friends and family’s disappointments.  You’d think that after seven long years, they’d finally get that sarcoidosis is not a linear disease, that just because I felt well enough to take a big trip in February doesn’t mean I’m well enough to pick up my normal life again.  It’s almost mind boggling how quickly people start heaping demands on me, always with the preface, “since you’re feeling better.”

Let me say this LOUD and clear for those of you living with or loving someone who has a chronic illness: chronic means that it doesn’t go away.  We’re not dealing with strep throat here.  Chronic illnesses wax and wane.  A chronic illness will let you take a trip or write an article or host a dinner party, but such activities exact a high price in return.

I’m lucky to have a partner who understands this—for the most part.  I’m lucky that my parents and friends do too—for the most part.  The toughest nut to crack, of course, is myself.  I push myself too much.  I get impatient when I can’t make my body obey my constant demands for more, more, more.  I’m the one who is melodramatic when I have no choice but to crawl into bed to wait for the vertigo to subside.  It’s me who drives my poor, sick body like a mean jockey flogging a tiring beast.  I lose all perspective of how far I’ve come.  I’m the one who needs to lighten up.  I need all the help I can get.

I’ve said it before, and I’m sure I will again: living with a chronic illness requires that you exist fully in each moment.  I’m sure this is one of the lessons I’m meant to learn from sarcoidosis.  Live now.  If I can write an article, take a walk, or travel to Iceland right now—do it.  If I’ve got to stay in bed, deal with pain, or contend with vertigo right now—so be it.  Trying to affix a label on the totality of my moments—by branding my moments as “well” or “sick”—is crazy-making.

I am both doing better and staying sick.  Instead of those troublesome labels, I try to envision my moments as beautiful bubbles that Andrew has launched into the spring wind.  I am writing in one bubble.  It will pop.  Such is life, right?  Here I am in another bubble, holding my head in pain.  Pop.  I ride the breeze with Andrew and Jay in the next bubble.

What’s next?

Permalink 11 Comments

She Works Hard for the Money

May 2, 2011 at 3:19 pm (Uncategorized)

I know I’ve vanished from this blog for the past few weeks.  I wasn’t hospitalized.  I wasn’t off seeing sarcoidosis specialists.  I wasn’t too tanked up on pain medicines to be able to form words.  I wasn’t blind half the day, or tipping over from vertigo (at least, not all of the time).  Something stranger and more mysterious than neurosarcoidosis was happening.

I was working.

For the first time in a long time, I was earning money for my labor.  I pitched an idea to a magazine.  Then I followed up aggressively with the editors.  I got an assignment to write an article—about something other than sickness.  I researched my topic, pestered people for interviews, and transcribed my interviews into notes.  I wrote a first draft, asked my husband, Jay, to edit it, incorporated some of his changes, and wrote another draft.  I proof-read it for typos and mistakes, anguished over it, and e-mailed it off to the editor.  Once I get his comments, I’ll incorporate them.  I might have to rewrite it again.  When it’s all completed, I’ll have a two-page article published in a solid magazine—and a check for whatever 55 cents a word adds up to.

This used to be my life.  It wasn’t glamorous, and it didn’t pay well.  But I got a small thrill with each check.  I got money for thinking and writing.  It doesn’t get much better than that.

I tried to keep working in Chronic Town.  I sent off a few essays, and I launched this blog.  But I just couldn’t keep going.  When the sarcoidosis moved into my brain, I had a hard time reading the words I typed.  The terrible pain in my head could only be managed with hard-hitting narcotic pain medicine, which didn’t exactly clarify my thinking.  Plus, as all us in Chronic Town know, the illness devoured my time—sitting in doctors’ offices, getting all-day drug infusions, or sleeping in the fruitless attempt to sate the insatiable fatigue the illness caused.  I stopped trying to work on deadline after one particularly frustrating day when the words I was trying to write didn’t coalesce into anything resembling language, but instead swirled and danced in time with the throbbing in my head.  After that, I didn’t stop trying to write.  I kept up this blog as much as I could, and I plodded along on a memoir about my experiences in Chronic Town.  However, I gave up getting paid for my work.

I was too sick to recognize the magnitude of this loss.  Work is about much more than a weekly pay-check.  It defines us.  When you’re chatting at a cocktail party, what’s the first thing you ask someone you’ve just met?  The answer to “What do you do?” is your identity.  Of course, it’s not all of you, but in our work-centered world, answering that key question with, “Um.  I’m chronically ill and can’t do much a hell of a lot more than sleep 14 hours a day and go to doctors’ appointments” isn’t a very satisfying experience.  Trust me.  I know.

Work anchors us.  It gives shape to our days.  It connects us to a place and a community.  Without work, days feel flabby and formless.  When you’re home sick—month after month—the “work” hours are the loneliest.  While the rest of the world is at the office, you wait.  The days fly by, and yet feel endless.  Resting and relaxing just aren’t that fun after a couple of days.  Resting after a hard day’s work is true rest.  Resting after twelve hours’ sleep is just depressing.

It’s ironic that I’m composing a paean to work life.  I’ve never been one to work for the sake of working.  I’ve chafed against meaningless jobs that provide nothing but a check.  I’ve always wanted my work to mean something.  That’s why becoming a somewhat successful writer was so damn cool.  I felt like I was making a difference, and that I was using my talents.  Before this, I flitted from brainless job to soulless job—filing papers at a seedy used car lot, selling expensive wedding cakes at a high-end bakery, cleaning houses, answering phones, and sending out bills for a power company.  Although I didn’t last long at any of these, that’s more than I can say about the two jobs I literally walked out of on my first day—at a telemarketing gig where I was supposed to lure business clients into holding corporate functions at a race track and at an especially anal office in the Defense Department.

As with so much else in life, I didn’t appreciate the value of work until I lost the ability to do any.  Without the capacity to pay for my share, I discovered all sorts of nasty power dynamics in my relationship with Jay.  Although he always says we’re equal partners, it doesn’t always feel that way to me.  And it’s bothered me that Andrew hasn’t gotten to seem me as a worker.  For much of his life, I’ve been horizontal.

The value of work transcends paychecks and the family dynamics surrounding them.  Working is a core aspect of our humanity.  We’ve always had to work to put food on the table.  While working, we use our bodies, minds, and, yes, I think even our souls, to create.  Through working we earn rest.

I’m not sure how long this period of feeling well enough to work will last.  It’s already been tricky to figure out how much I can work without triggering a backlash from the sarcoidosis.  If I push myself too hard for too long, I feel sicker.  A few times I’ve had to retreat to bed—and whole, long days of resting—to recover from my comparatively small-seeming efforts that are nonetheless over-zealous for my depleted body.  I’m trying not to worry about how or when my working days will come to and end.  That would spoil the fun of it.

And now, I’d better get back to work.

Permalink 1 Comment