How We Roll: Travel and Chronic Illness

For the next edition of Patients for a Moment, Duncan Cross asks how we roll with chronic illness. Since I’ve made two fairly long car trips in the past couple months, travel is a timely topic for me.

When I read the prompt, I couldn’t help but pull up a post from the vault, this entry from July of 2006 that captured my most humiliating experience ever. Click on over for the gory details, but it involves airline inconsistency, public disclosure of personal health details, an insensitive bully, a whole lot of red-faced shouting, and The Vest, my expensive and unwieldy piece of medical equipment. Good times.

Aside from traveling to see family, we don’t really have a chance to travel much. In fact, a five-day trip this spring was the first real true vacation we’ve had in years. We haven’t had the time—and haven’t made the time, I suppose. But beyond that, I end up having to cancel things at the last minute often, which makes me hesitant to plan too far ahead. I end up paying a steep price whenever I do make a trip, even a short overnight for a conference or a meeting. Inevitably, I catch something from being on the airplane, and it takes weeks, sometimes months, to clear my system.

So, given that airline travel makes me sick, and my hesitancy to purchase the ever-expensive plane tickets too far in advance, when we do need to be somewhere, we’ve started driving. (Unless it is just too far and too short or a trip, or we find a great deal on tickets, and it’s not cold/flu season, etc.) We have family in Michigan, so years of 12-hour drives have helped condition me. We can control how long we’re on the road, we can stop if we need to, and we honestly, we really love the chance to just chat. Sometimes we’re several states in before we even turn on the music.

By now, we know which rest areas have viable food options for me, as gluten-free food is tough to find on the road. We know which hotels take dogs, which routes have the best views, and the best spots to fill up on gas.

I’ve learned to keep my “regular” meds in my purse in the front so I can reach them easily. We pack tons of water and low-sugar drinks, and I’ve started bring a cooler of healthy snacks—balanced nutrition bars, trail mix, yogurt, etc. That way, if the (scant) salad offerings are more meager than usual, I know I have something to eat that is gluten-free and has protein. I keep my brain fog in mind when we divvy up the driving.

(And for the toddler? Lots of books, snacks, and a mini DVD player she watches Baby Signing Time and Sesame Street on. She can turn it on and off, rewind/fast forward, and change the volume on her own, which makes the process pretty painless. So far, we’ve been really luck she rolls so easily and without complaint.)

Of course I do fly and take the train at times, but taking travel into my own terms (and staying healthier for it) has made a big difference.

When the Familiar Becomes Something New

We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I’d spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how naïve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)