Girl’s Night…In

April 20, 2012 at 12:45 pm (Uncategorized)

I had a rare opportunity a few nights ago. I was alone. On my own. With Jay out of town for work, and Andrew off on a sleep-over, I had a night—and time—to myself.

I dropped Andrew off at his martial arts class around five. I wasn’t feeling tremendously well. Although I seem to be—ever so slowly—shaking free from my latest flare-up of neurosarcoidosis—getting through anything resembling a “normal” day leaves me exhausted and in pain.

I spent half the drive home wondering if left-over pizza with carrot sticks on the side constituted a “healthy” dinner for Andrew and how the hell I was going to make it through the day’s remaining hours and tasks. Then I remembered that my dear friend Martha was picking Andrew up from his class, and bringing him back to her house for a sleepover with her daughter, who also happens to be one of his best friends.

That realization was intense and beautiful. A night to myself – I was almost giddy. It was a “Let my People Go” kind of moment. It was rife with possibility. I blasted the radio as I turned onto my street. If only I had a George Michael CD with me (“Freedom, freedom…” – work with me here, people, I’m a child of the ‘80s). It would have been perfect.

As I parked the car in the driveway, a thousand options for this night alone raced through my brain. I could meet a friend for a glass of wine, or go out for a glass of wine on my own. There were movies to see. I could venture to a theater, or—for once—control Netflix in my house. I could take a book out onto the deck and enjoy one of the year’s first warm evenings. I could crack open my book project, which has been languishing for months. I could call an old friend and catch up. I could write gloomy poetry in my journal.

And then, as I turned off the car and hauled myself to my front door, I could feel every bone in my body sighing with tiredness. My head was throbbing. All those possible activities for the evening felt like tiny weights, pulling down my body and my spirit. I would have to make myself do any of those “fun” things. This didn’t feel all that freeing, after all.

If all of this had happened four or five years ago, I would have forced myself out to “enjoy” my evening alone, inflicting a night of mandatory fun on myself. It would have left me more tired and sicker feeling. But damn it, I would have fun, even if it killed me. Back then I was still trying to keep up with memories of my twenty-year old self, who liked to do tequila shots and dance all night long—and then sweat out the hangover by hiking twenty miles the next day, or my thirty -year old self, who could work twelve hours a day, spend an hour at the gym, and then dash home to make some gourmet-ish meal. Letting myself change felt like conceding crucial territory to the disease. I didn’t like change. Rather than ease into a new role as mother—and a mother with some health problems—I kept flagellating myself for not being healthy or energetic enough for the old stuff, and especially for not wanting the old stuff.

Maybe there is something to that adage about getting older and wiser because this night, I didn’t even seriously consider making myself go do something. Instead, I paused for a moment or two after I crossed the threshold into my silent and welcoming house. How did I want to spend this night alone? Well, I wanted to be alone. I didn’t want to ring up an old friend or meet up with anyone. I wanted to be home. I wanted to care for my tired, hurting body. I do spend a lot of time at home stuck in bed, but I could happily change things up and lounge in the living room.

I settled on the perfect plan for my evening. I dined on a big bowl of my favorite cereal. I sat in the cushiest recliner in the living room, and watched the evening descend on our backyard. Both cats settled on my lap. We shared the silence and the coming twilight. It was lovely. At 7:45, I went to bed. I had no responsibilities. I didn’t need to keep up my end of a conversation. I didn’t need to be anything other than the tired—and thankful—40-year old woman that I am.

What’s your ideal night alone?

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Mirror, Mirror

April 18, 2012 at 1:35 pm (Uncategorized)

“You look good,” said the acquaintance I ran into when I was out last week. It was one of the few times in many days that I was able to venture more than a few feet from my bed. I wasn’t feeling very well, though.

My guess is that people read my blog and know that I’ve been having a tough time lately. They read about my monthly chemo treatments and my recent flare-up of neurological problems. They probably have a mental picture of what someone looks like when they are living through chemo and blind spells. And apparently, I’m not it. I probably look better than expected. I’ve been told many times in the past weeks that I look healthy, well, or good.

To be honest, it’s hard to hear how good I’m looking. I know that people offer this comment with the best of intentions. But on days when I am not feeling good, this off-handed compliment almost feels like a slap. It’s as if there’s an unspoken second part to “You look good,” when it is uttered by people who know about my struggles with sarcoidosis. I can almost hear it. “So why aren’t you well?” Maybe that’s not what they mean. Maybe that’s just the question I ask myself, over and over and over. But it can be awfully hard to separate the two.

Let’s be clear, though – I like getting compliments. I don’t think I’d take it all that well if people were coming up to me and saying “Wow, Rebecca, you really look like shit.” And I worry that in writing this, you will think I am either insane or incredibly touchy. But, as anyone in Chronic Town knows, the discrepancy between how we look and how we feel is a complicated one. Most chronic illnesses don’t leave the physical markers we’ve come to associate with disease. Cancer and AIDS are probably the illnesses that get portrayed the most in popular culture. Close your eyes and see what images come to you with the word “illness.” I’m betting you conjured up someone bald from chemo, or someone very frail, reduced to skin and bones, maybe pale and sallow.

Before I sat down to write this, I spent a few minutes staring in the bathroom mirror. Compared to Emma Thompson in Wit or Susan Sarandon in Stepmom or Tom Hanks in the later scenes of Philadelphia, I am virtually the picture of health. Gauntness certainly isn’t something I need to worry about. Eight long years on varying doses of prednisone have left my face full and fleshy. In the past few months, I’ve had to increase my daily dose to over 60 mg. and get several intravenous infusions of prednisone. The higher dose has caused my face to flush. At a casual glance, I probably look like I’ve got a healthy glow. My hair isn’t looking too sick either. The chemotherapy I get every month doesn’t cause hair loss. Like millions of lymphoma patients who take the same medication, I’ve got a full head of hair.

Since I don’t get to leave the house too often these days, I also take care of my appearance when I do. I lost most of my brows during my first chemo regimen, so I carefully pencil in fake ones using my few remaining natural hairs to guide me. I lather concealer on the prodigious dark bags beneath my eyes, and add a little artificial color to my cheeks if my prednisone flush isn’t blooming.

It’s the disjunction between how I look and how I feel that makes “you look good” such a complicated compliment. People who know me well—and care to give me more than a glance—know to look below the rosy cheeks, fat face, and make-up. Jay says that when I’m not feeling well, I get a pallor that cuts through the prednisone and the blusher. My local doctor reads my pain in my eyes, and in how I hunch my neck. And in that disjunction, there is room for all kinds of mischief.

As Susan Sontag so brilliantly made clear, first in Illness as a Metaphor and then in AIDS as a Metaphor, sickness gets a hefty load of cultural baggage dumped on it. Sontag argued, sometimes acerbically, sometimes passionately, that we need to strip away the metaphors we heap onto illness. Sontag—who was undergoing treatment for breast cancer when she wrote Illness as a Metaphor—urged us to relinquish the metaphors and the myths surrounding sickness: that people get what they deserve, or that it’s part of some divine plan, or that there are “good” diseases and “bad” diseases, or that we should never talk about the sick, or that we should always talk about the sick, and on and on and on. In the end, the weight of all our cultural preconceptions about why some people get sick and what sickness (and treatment) look like make it harder simply to be sick. And it’s hard enough already.

There are a lot of us with chronic illnesses moving, undetected, through the world. We don’t have signs hung around our neck. Those of us with sarcoidosis, multiple sclerosis, lupus, rheumatoid arthritis, Crohn’s disease—and a host of other debilitating illnesses that are little understood—usually keep our hair. There are an estimated 50 million of us in the United States, trying for normal lives in spite of illness, in spite of unrelenting exhaustion, in spite of debilitating treatments, in spite of pain. And the crazy thing is that we can (and often do) look pretty good.

So what do I say when a well-intentioned acquaintance tells me optimistically, on a day when I’ve searing head pain or have just fended off a spell of god-awful vertigo, that I look good? What can I say? It is beyond the limits of polite conversation to say that, actually, I am really not good at all. I am rather crappy. And I’ve got to assume that when someone says this to me—and they are someone who knows about my 8-year battle with sarcoidosis—they are intending to lift me up with a compliment rather than make me feel a little crazy. I must assume their innocuous nice comment isn’t emerging from metaphors about illness or cultural assumptions about what “real” illness looks like. I’ve got to choose the light, rather than the dark. I’ve got to assume that this is fraught because of my issues—not theirs. This is a small thing. This is about me. This is not a big deal.

What do I say when someone tells me that I look good?

I say, “Thank you.”

What else is there to say?

What came to you when you closed your eyes and said the word “illness” to yourself? Do you ever get comments that are hard or complicated to hear?

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Dig A Hole…To China

April 11, 2012 at 2:21 pm (Uncategorized)

When the going gets rough in Chronic Town, the tough—or the foolishly optimistic—go to China. And then they fall apart for a couple of weeks.

I’m not just waxing metaphorical for once. Jay, Andrew, and I actually went to China in March. We first conceived this trip when, months earlier, Jay discovered a ridiculously cheap deal for package that included airfare, an upscale hotel, and a few days of tours in and around Beijing. When I say ridiculously cheap, I am not exaggerating. We could not have flow to Dubuque, Iowa, and stayed for six nights, for the same price.

I wanted to go desperately (and not just because it was a good deal). I fell in love with Asia when Jay and I spent time exploring Thailand, Vietnam, and Cambodia when we lived on that side of the world in our pre-Andrew and pre-sarcoidosis days. We knew we wanted to get to China. In fact, when Andrew was in utero we decided that we would find work in China and spend Andrew’s kindergarten year living there.

You already know that saying about what happens to the best laid plans. We managed one wonderful trip to our old stomping grounds in Thailand when Andrew was a cherubic toddler. We got to introduce him to our Thai friends, who cooed over his curls. He still has a few shadowy memories of this trip.

Then the sarcoidosis in my heart, lungs, and liver moved aggressively into my nervous system. Andrew went to kindergarten at our monoglot neighborhood school, not in some far-flung rural province in China. I didn’t venture much further than my back yard for a few years when the neurosarcoidosis was at its worse, and when I was getting Cytoxan—a nasty chemotherapy—every other week to fight the disease.

Even though our master plan of living in China and hatching a bilingual son didn’t come through on schedule, I didn’t let go of wanting to go there. Longing to go there, really. If I try to explain this desire in a couple of sentences, it will sound trite. But here goes. The size of the place, its millennia of history, and its resilience fascinated me. Asia fascinates me. I like the food, the people, the differences between my world—and the startling similarities.

The absurdly cheap deal seemed like a contained and manageable way to get a first taste of this vast land. Rather than have to choose between Beijing and Shanghai, the cliffs above the Yangtze River or the army of terra cotta warriors in Xi’An, we opted for the chance to spend a few days in Beijing—and dip our toes back into traveling to Asia.

It seemed unlikely that we’d be able to pull off the trip, though, after I ruptured my ankle ligaments at the end of January. The ankle injury set off a flare-up of neurosarcoidosis. As we counted down the days to our scheduled departure on March 9, Jay and I waffled about whether to try and go. Even though I was out of the giant orthopedic boot, my ankle wasn’t even in the vicinity of being healed. Walking and standing hurt. Sitting hurt. Could I make it through the twelve hour flight from San Francisco to Beijing? What would happen when I got there? I couldn’t walk around the city for more than twenty or thirty minutes at a stretch. Sure, I would have the opportunity to check something off my “bucket list” and see the Great Wall, but would I be able to walk on it?

More sobering were our worries about non-orthopedic health concerns. I’d gotten two massive doses of IV prednisone to (hopefully) help with the uptick in neurological problems I was experiencing. But what if we got all the way to China, and I fell apart, neurologically speaking? Then there was the matter of my compromised immune system. Years of getting infusions of Rituxan and Remicade, combined with lots of prednisone and CellCept have left my immune system weakened. Would I catch come bizarre new flu? We’d also heard that Beijing’s air quality was terrible because of pollution. What would this mean for my bad lungs?

Jay and I talked it through—and then again, and again, and again, about 25,000 times. We developed contingency plans, and then contingency plans for the contingencies. We solicited the opinion of the sarcoidosis guru who oversees my treatment plan, and the advice of my local doctor who knows me better. They both said to bring a mask for air pollution, Imodium, a big bottle of hand sanitizer, and antibiotics. But they also thought that I should take the risk—and the opportunity—and go to China.

With a couple of exceptions, I didn’t get much support from the people who love me. Precisely because they love me—and want me to be around for as long as I can—they didn’t want me to risk my health on something as frivolous as a trip. I tried to explain that this wasn’t simply a trip for me. It was a chance to take up a part of my life in a part of the world I’d been forced to abandon. Traveling was an essential part of my pre-sarcoidosis identity. Laying claim to this week in Beijing meant reconnecting with that piece of me. There was risk in going, of course. But there is risk in most everything. With the support of my medical team, I was confident that the risk was a calculated and manageable one. This is my life, and I want to live it.

It turned out that with some babying, my ankle could do quite a lot. I was able to hike with my family for two hours on the Great Wall. We climbed—and climbed—to the North 8th Watch Tower on the Badaling section. It was breathtaking. It was wonderful. It was a high point in my life, and I loved every step.

It also turned out that the air in Beijing was worse than anything I could have imagined. It was so smoggy and dusty that objects a few feet away were obscured in a misty haze of pollution. Not surprisingly, I got a respiratory infection. I took the just-in-case antibiotics I’d brought along, and was still really sick. I missed a few activities in our final days in Beijing, and felt rather horrid on the long flight home. We went from the airport in San Francisco directly to an urgent care doctor to see if I’d contracted pneumonia. (I didn’t, but I’m still hacking up particulates from deep in my lungs.) As always, nasty bugs seem to trigger the underlying disease to flare-up, so I’ve also had to contend with more vertigo, blind spells, and headaches in the couple weeks since we got back.

So I fell into the magical hole we dug to China. But I am climbing back out. Expect more regular posts to this blog again. I don’t begrudge (well, most of the time) my body for falling apart after such a big adventure—because it was a big adventure. It was a trip to a distant land, and yet it felt like I was coming home.

Have you ever taken a calculated risk to accomplish something important to you? Was it worth it?

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