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?


  1. Leanne Shirtliffe said,

    It’s good to read your writing again. You know traveling is in my soul, too, even though I don’t do it much know. Yet. I’m hatching some plans, and you’re reminding me of them. Lots of things are pointing similar directions.

    There are 3 major risks I took in my life that changed me:
    – Going to sleep-away camp alone the summer after Grade 4. I’d never been away from home before (except for sleepovers at my cousin’s or at my best friend’s). I knew no one. I cried myself to sleep for 3 nights. It was hard. I survived. I loved it.
    -Going away alone to college in a province I’d never been to. I hopped on a plane and managed.
    -Going away alone to teach in the Middle East to a country I’d never been to.
    All hugely formative.

    Welcome back, R. Sending you health!

    • Rebecca Stanfel said,

      Hi Leanne,

      Thanks for welcoming me back. Your taking the time to keep up with my stuff here is such a gift. Really.

      Those risks sound like huge ones. I think every big risk–the ones that pay off and make us who we are–can be summed up in your three sentences. “It was hard. I survived. I loved it.” It’s so easy to get into a routine that is easy, and to resent the hard parts that growing require. I battle with myself over this all the time. I had to battle myself to China.

      It is good to be able to write a little again. I am excited to get back to keeping up with blogs like yours. I’m still having issues with reading and writing causing vertigo, but I think I am getting a little better each day.

      Thanks again.


  2. livrancourt said,

    What an awesome post. I have some good friends who also got an amazing deal for a trip to China (through Groupon, I think). She got pregnant and then he got diagnosed with cancer and started chemo. It was all just too much, and they had to cancel the trip. I’m glad your trip worked out so well. It sounds like it was totally worth it.
    Take care…

    • Rebecca Stanfel said,

      Hi Liv,

      Thanks for taking the time to comment! I am so grateful our trip worked out. Like your friends, I was thinking it was all just too much for us right now. But, luckily, it wasn’t–though there were times when I thought to myself, “What the hell have I done?”

      As I wrote in response to Leanne’s comment, I am slowly regaining my ability to read and write. (One of the worst symptoms of the disease I have is that reading and writing–my two joys–can cause severe vertigo and then severe pain.) As I recover from this latest flare-up, I am now beginning to dip my toes back into words. I am excited to return to keeping up with other folks’ blogs. I will check out yours soon!

      In the meantime, thanks for reading.

      take care,

  3. Ellen Gregory said,

    I don’t think I’ve ever had to contend with the challenges you face every day, Rebecca. What a brave adventure you had! All I can say is that I tend to heed my heart when it’s warring with my head, and like to think I would make the same brave decision.

    I’ve visited the Great Wall, and it’s indeed a magical place. I would love to spend a few days just walking along it, maybe in the dead of night when all the tourists have abandoned it for the day. Something to aspire to 🙂

    Glad to hear you’re feeling better, and I look forward to reading more of your journey.

    • Rebecca Stanfel said,

      Hi Ellen,

      Thanks for the nice comments. I like the way you framed the battle between heart and head because that is exactly what it felt like when I was trying to figure out whether or not to go.

      I had the same response to the wall. I wanted to hike along the great length of the thing. I know a couple people who have done this (and one blogged about it). What an experience that would be. I was glad that we were able to walk beyond most of the foreign tourists for our one day. There were still hundreds of Chinese people walking with us, but somehow that felt a little different.

      I appreciate you taking the time to read and comment.


  4. Elaine Smothers said,

    So good to see you back and so exciting to read about your adventure! Dreams of the heart have a way of calling us until we answer and I’m glad to hear you followed your heart all the way to China!

    I guess my biggest calculated risk has been skydiving. After 2 horrible in-air experiences on commercial aircraft, I swore I’d never fly again. But skydiving was something I just had to experience, so I got on that plane just long enough to get to altitude and jump out. Oh yeah, it was SO worth it!

    Wishing you blessings and health!

    • Rebecca Stanfel said,

      Thank you Elaine,

      You’re so right about dreams of the heart calling us. Beautifully written.

      It is good to be back to writing a little. It’s frustrating that I can’t be reading and writing as much as I want. I haven’t yet been able to read any blogs because I’m still dealing with the vertigo that reading and writing can trigger when I’m in a disease flare-up. But I am looking forward to reading yours.

      Skydiving. WOW! I love how your reclaimed flying from the lousy commercial experiences. I think you are very, VERY brave.

      Thanks for checking in.


  5. Barbara Barnes said,

    Reading your piece I got a sense that you have reclaimed more of your pre-sarc self than just the traveling soul. Hmmm. I confess to being almost as thrilled that you had gone as I was worried that you had gone. And, when I read your description of the Great Wall hike, I cried with joy for you and your family! My Grandmother walked the Great wall when she was 81 years old…

    My risks? Well, being uninsured is one, and I enjoy having time with my daughter and the horses instead of working another job to afford the premium. Biting my tongue when my daughter wants to do stuff that is completely foreign to every cell in my body, and getting the reward of watching her become Who She Is. Asking a revered animal healer if I could shadow him sometimes and getting to be with horses in a very sacred way. Telling the truth to myself about myself.. and so far, except for the energy it freed up because I don’t hide from myself anymore, the jury is still out… although I am glad for the leap and the self empathy.

    Loving you and celebrating reading your words that you so skillfully put together to proved a whole hearted experience for us readers.

    • Barbara Barnes said,

      er..PROVIDE, not proved..lol

    • Rebecca Stanfel said,

      Hi Barb,
      Getting to read your wonderful–and spot on–comments makes it fun to write. Thank you for taking the time to keep up with my stuff–and for reading with such care.

      You are absolutely right that I was getting connected with a pre-sarc piece of myself that transcended travel. Maybe it was the risk-taker. I used to take some pretty outrageous risks (like moving to a tropical island I’d never heard of before for a year-long contract), and many of them resulted in wonderful experiences–transformative experiences that continue to define me. But the long fight with chronic illness has made me brittle and afraid. I try and push back, but it’s there. So, taking this trip felt like saying to myself, “I want this experience, but it has risks, but life has risks, and I need to do this because I am alive.”

      I love our description of your work with horses. I wish you didn’t have to take the risk with health insurance. I wish we lived in a country that cared for each citizen. But I am glad you are working with the horses.

      Thanks again,

  6. Marianne said,

    I think it’s wonderful you went. I want my kids to live in Europe for a year, but we shall see what happens. (I’m not adventurous to live in China for a year) It’s good to know you’re back and getting better. I hope to see you soon.

    • Rebecca Stanfel said,

      Thanks, Marianne,

      A year in Europe with 3 children sounds pretty adventurous to me! (But, then, going to grocery store with 3 kids sounds pretty adventurous to me, too. Only having 1 kids makes me a little wimpy, I guess).

      Thanks for reading and for taking the time to comment. Yes! I want to get together. I almost afraid to set something up because I have been such a flake lately–a flake with good reasons for being a flake, but a flake nonetheless. I’m also wondering about getting away for a weekend to write together.


  7. Katie Jordan said,

    Rebecca! This is one of your best posts. It is joyous to hear YOU come through the tone of this particular blog, and not the voice of the sarcoidosis. Chinese hole or no, I dig it.

    • Rebecca Stanfel said,

      Thanks, Katie!

      It’s great to hear from you. I am glad you liked this one.

      Let’s be in touch soon,

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