Medical Tourism – Day One

April 23, 2010 at 9:16 am (Uncategorized)

It’s late here in Ohio—two hours further into the night than my body’s internal clock. But the jump in time zones isn’t why I’m up late in the hotel room while Andrew and Jay snore in syncopation a few feet away from me. I’m tired too. Exhausted, actually. We had to get up at 4:30 this morning to catch the first of three airplanes that brought us here.

Flying discombobulates my body and mind under the best circumstances. Although I love the prospect of a trip—and I recognize how convenient it is to soar across the continent—I don’t like it. I know that domestic airline travel is statistically much safer than driving. Still, I don’t trust that the plane will stay aloft. I love to watch Andrew’s joy as the plane roars down the runway and then touches the sky. But I find it improbable that humans can slap together metal and plastic, douse this contraption with fuel, and then make it rise into the air. While Andrew seems to see only the mightiness of the plane at take-off, I feel the heaviness of gravity and the weight of the machine pulling it back to the ground.

Today was particularly unpleasant for a fearful flyer. Thunderstorms were roiling the air all across the west. It was intermittently bumpy from Helena to Salt Lake City, but on our Salt Lake City to Denver leg, it was too stormy to land. We learned later that a tornado touched down near Denver. So our little airplane had to circle outside the zone of danger for about an hour before we could land. Even Andrew—who flew from Seattle to Seoul with nary a burp—began to complain that his stomach was upset. As we dipped and rattled through the thick, grey air, I told myself we were not going to die—and then prayed that maybe my son could be spared if we crashed. I’m sure my typical melodramatic impulses were ratcheted up a few octaves by sleep deprivation. It was also tiring to keep pretending that I wasn’t terrified for so long. I do not want to pass along my irrational fears to Andrew, so I’ve always made myself unlock my jaw, prattle about the view outside the plane’s window, and smile. I can pull this off for the occasional precipitous drop in altitude, but not for an hour.

Our flight from Denver to Ohio wasn’t much smoother. But Andrew zoned out in front of a movie, which left me a chance to nap long enough to take my mind off the choppy ride. I was also grateful, and this improved my outlook. Even though we landed over an hour late in Denver, the airline had held our plane to Ohio for us. So much of air travel now feels like Greyhound bus trips that when I get such an extravagant reminder of the airlines’ old ways of doing business, I’m doubly shocked and pleased. Without this act of mercy—which inconvenienced dozens of other weary travelers—we would have been stuck in Denver until the storms blew clear and the traffic jams on the runways abated. Probably we wouldn’t have made it here until late at night. I would be even more strung out and edgy. Andrew’s problems couldn’t be eased, though. Just as we were making our final descent on our final flight, his queasiness swelled into air sickness. There were no barf bags in our row, so the poor kid just puked all over himself, me, and the carry-ons we’d jammed under our feet.

For the next hour—while I mopped us up as best as I could, while we trudged through the airport in vomit-soaked clothes, while we claimed our suitcases and found clean clothes, while I waited as Jay helped Drew change in the men’s bathroom, while we lugged our baggage onto the rental car shuttle, while we drove down the rush-hour freeway in search of our hotel—I came close to dissolving into tears, panic, and exhaustion. It’s not that I’m particularly averse to barf, rental car shuttles, freeways, or Mapquest directions. All that I can handle. It’s just that the long day of traveling collided with my anxiety about seeing the sarcoidosis expert on Friday with enough electricity and tumult to rival those Denver thunderstorms. I was exhausted from last week’s chemo. The vertigo, headache, and blind spells that characterize my neurosarcoidosis (and are the main reason I travel so far to get specialized medical care) came on so quickly it felt like Jay had flicked a demonic switch on my head. It was all too much, I thought. I can’t be sick and have to make such difficult journeys to try to get well. The whole enterprise is flawed by this perverse illogic. Why are those of us who are sickest with the most obscure diseases the people who have to go across continents for care? And then I began to fret over the nature of tomorrow’s appointment. My local doctor has made it clear that I need to find a sarcoidosis expert to replace this guy I’m seeing. I can continue to visit this doctor for my own edification, but my local doctor needs an expert that is a better communicator. I’m not planning on taking up my appointment tomorrow with these issues (after all, I’ve come a long way for an hour-long slot). But during that tenuous hour between Andrew’s barfing and arriving at the hotel, it felt impossible to get what I need from the doctor tomorrow—his ideas for my treatment for the next six months.

Once we arrived at the hotel, my mood cleared as quickly a tornado recedes back into the sky. We ordered Chinese food and ate it picnic-style on the hotel room floor. We rolled up mu shu pancakes and gobbled down steamed dumplings and talked about the great vacation we will have for all the hours I’m not seeing the doctor—167 vacation hours, 1 doctor hour, as we’re telling ourselves. While we made our way through Andrew’s bed-time routines, it dawned on me that the process of traveling to get care is a lot like the care itself. What I mean is that when it comes to chronic illness, you have to survive an overload of sturm und drang to get proper care. As I’ve written before, diagnosing and treating sarcoidosis isn’t remotely akin to doing the same for strep throat or a bladder infection. It is hard to get answers, to find the right doctor, to stay with that doctor—just like it’s hard to travel from Montana to Ohio with a young child on a stormy day. But we made it, just like I’ll make it through tomorrow’s appointment and get the answers I need.

2 Comments

  1. Roz Heafitz said,

    And it is you who again and again digs so deep to find the understanding that elucidates and illuminates the complexity of your journey. Your capacity to notice and to make the shift from enduring storm to celebrating vacation is an action of gracefulness which I celebrate.
    love,
    Your MA mom

  2. SharonMV said,

    I hope you had an informative & useful appointment with the doctor. Is he a good communicator? Willing to take you on & help your local doc?

    Sharon

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