Travel with Chronic Illness: Learning Gratitude 🙏 & Perspective

The summer I turned 20, my best friend and I spent a month backpacking in Europe. It was 2009 – before iPhones and apps and Airbnb. Arnold Schwarz was the only celebrity politician and Couchsurfing.com was the best way to get lodging with locals on the cheap.

I managed the entire trip without a migraine attack (although vertigo was a near-daily struggle). Shortly after I returned home, though, I was hit with the most horrifying, disabling refractory attack I’d ever experienced.

I spent six weeks in the dark on my parents’ couch, counting down the days until the start of my junior year of college. I was terrified the attack would never leave. I was terrified I wouldn’t be able to go back to school or finish my degree.

I was lucky – so, so lucky, although I didn’t realize it at the time. Shortly before I drove the 2.5 hours back to school, my migraine attack began to subside. Each day I was less disabled by the pain, nausea, light and sound sensitivity. I managed to not miss a single day of school.

But my brain was different, altered in subtle ways only noticeable to me. Driving on the busy freeways of Southern California was suddenly a challenge. The cars whizzing in the periphery made me sick. Headlights became so bright that I had to stop driving after dark.

I had a headache every day for a year. Not a full-blown migraine attack, but my brain, face, scalp, and neck felt bruised. My thoughts felt heavy and slow.

It took me a full year to recover from my 6-week status migrainosus (aka a migraine attack that lasts longer than 72 hours). I realize, now, that I was lucky to recover. Three years later I would be less lucky.

Migraine managed to squash the travel bug that had bitten me in Europe. At 20 years old, I grieved the first (but definitely not last) dream stolen by the Migraine Thief. International travel, I thought, was simply not possible with my sensitive brain.

Graded Exposure: Every Journey Begins with a Single Step

I’m scribbling these words, now, in 2019 flying 4000 ft in the air, looking down on villages that look like dollhouses scattered between the hills of Guatemala. I’ve spent the past 9 days exploring the mountains and rainforests of Costa Rica.

For 9 days, I was a tourist, gawking at tropical plants, gobbling gallo pinto, and immersing myself in a new place. I wept as hundred of electric blue butterflies flew around my head. I closed my eyes and lifted my face to the warm, falling rain.

I watched spider monkeys swing effortlessly from tree to tree and watched a mother howler guide her baby through the canopy. I hiked the lava flow of an active volcano and bathed in natural mineral springs with languid iguanas.

Chronic daily migraine had me convinced for years that I would never again experience the wonder and joy that comes with traveling far from home. Migraine was wrong – I was wrong – and for that, I am grateful.

Yes – Migraine did follow me to the tropics. We with chronic illness are not afforded the luxury of a day off. While traveling, I dealt with pain and fear of pain, but for the first time in too long, I felt like I was truly, blissfully alive.

If you’d have asked me 3 months ago if I thought I’d travel again outside of the United States, I would have said no. So what changed? Mostly, my mindset.

Graded exposure therapy, facilitated by my new physical therapist/boyfriend, was a huge help. The idea is simple: rather than jumping right into a new experience, you start with one toe dipped in the shallow end. Then a whole foot. Then both. Step by step you grow used to the cold until you feel comfortable completely submerged.

I’ve been preparing my mind and body for an international adventure with trips to the thrift store, meals in busy restaurants, and walks around the block. I’ve sat silently with my heart, feeling everything, and learning to self-soothe my amygdala. I’ve prayed and chanted mantras and meditated.

Mindfulness has given me back some of the autonomy and control that chronic migraine stole. My brain wants me to spend nearly every hour alone in a dark, quiet room. My soul needs me to experience nature and the thrill of new places.

My mind is strong enough, now, after years of practicing mindfulness, to override some of the fear-fed impulses of my animal brain.

A New Lease on Life

Too often it feels like migraine will swallow me whole. But migraine is one part of me – a bigger part than I’d like, but still just a part. When I haven’t left my house for a week or showered for days, it feels like I will never feel anything but pain, sickness, and grief ever again. But I am so much more than migraine.

Illness warps and narrows your perspective, threatening to change your soul. The antidote? Travel, new experiences, awe, and reveling in the joy of being alive.

Journeying through the rural, mountainous towns of Costa Rica, I am struck by how much I have. Years of grieving what I’ve lost blinded me, in part, to what I’ve gained and what I continue to hold on to (for dear life, literally).

Migraine is a part of me, I’m reminded every day. But so is gratitude, curiosity, kindness, and love. Mindfulness meditation helps me remember these parts I tend to forget.

Chronic illness is my cross to bear, and for the first time in years, I am confident that It will not crush me. Bolstered by community, family, and an iron will to live, I finally know that I am strong enough to carry it.

For that, I am very, very grateful.

Comments? Do you have any tips, tricks, or thoughts about traveling with chronic illness?