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?