Sarah WallockWe met traveling in Costa Rica.
Because I am a brain tumor survivor, there are certain things I have to look out for when traveling now, that previously may have never occurred to me.
- Don’t skip meals
- Stay hydrated
- Get enough rest
- Postpone your plans to catch up on sleep if needed
- Avoid alcohol
- Don’t overexercise
- Travel with a companion who knows your health history
- Share your location with loved ones
- Bring accessories to lower sensory input
- Make spur of the moment decisions to prioritize your health i.e. moving tables at a restaurant to avoid bright lights or loud noises
Cut back to Costa Rica, I’ve arrived to a group of strangers who would be biking around Lake Arenal and adventuring along the Oso Peninsula. Everyone on the trip had signed up because it was a bike tour. Except there was one woman who wasn’t on her bike. She was cheering for her sons and husband as they rode around Costa Rica and happy to imbibe fruit drinks and nibble on patacones. It never crossed my mind why she wasn’t biking, as she simply said it wasn’t her thing. Fair enough!
The first afternoon, we were greeted with welcome cocktails in our sweaty bike attire.
“I shouldn’t drink on this trip,” I thought to myself. “It could jeopardize my brain health.” But Sarah! You’re only in Costa Rica ONCE!? And they’re offering you a smidge of locally made alcohol for your mojito, just give it a try! So I did. It tasted delicious.
“Who wants a splash of alcohol,” the bartender said. “No alcohol for me,” the other woman chimed and sipped her virgin beverage in her cute and clean outfit from her day’s ride in the van. Her hair looked so good.
Later that night, we met with our fellow travelers for welcome drinks at the bar. I knew I couldn’t drink any more because it could impact my brain health. We said our awkward hellos to the travel group we’d just met and I knew my husband wouldn’t want an alcoholic drink either because we don’t drink much.
“Hola que tal!?” I said to the bartender. “Tienes maracuya jugo, no quiero una bebida con alcohol.”
“Ah! Tu hables espanol, muy bien!” He said with a huge smile from ear-to-ear. “Un momento por favor.”
“Dos!” My husband chimed in.
“Ah si, para mi eposo tambien!”
After a few minutes had passed, my new Costa Rican friend came out with massive goblets of fresh passionfruit juice for me and my husband with cute umbrellas on top. Everyone looked jealous of our fancy drinks and asked what they were. I could see the woman eyeing it up.
Following the post-bike mojito and the pre-dinner drinks, we were sitting at dinner with live music reverberating and the world started spinning. I felt like I was going to pass out and throw up. I tapped my husband and quietly excused myself without a word.
Hmm, let’s review the last 24 hours: 2 hours of sleep in a bed, a severely delayed international flight, changing altitude during the flight, 30 miles of biking in the rainforest, socializing with new people and trying to perform “normal” though I have symptoms, and having an alcoholic beverage.
I snuggled up into my massive king bed in Costa Rica with a huge canopy overlooking the rainforest with a private infinity pool. I felt so sick. I was thousands of miles from home and my brain was giving me signals that my body’s equilibrium was OFF.
Okay, to survive this trip, I need sleep, no alcohol, lots of hydration, low sensory input, and no overexercising. You got this, Sarah!
I cuddled up in bed and went to sleep, very scared. My husband went back to the dinner table to perform “normal” and not draw attention to ourselves.
Back to the drinks: this “no-alcohol please” charade continued every night for the rest of the trip, where our fellow travelers gulped down a cold beer or sipped on red wine after a long day of excursions. And I would perk up and ask for an non-alcoholic option in Spanish. Each night, the woman who wasn’t biking and I locked eyes right as my drink came. And she started asking for various juices too! I felt weirdly connected to her and I didn’t know why.
One day, off of our bikes, we went out for a rainforest excursion hike. I noticed how fragile and frail she was on this day. I assumed she was just sensitive, not used to hiking and heat, and completely out of her comfort zone. Boy was I wrong… I misjudged her. I made a mistake. The same way people are constantly misjudging me, I misjudged one of my travel partners.
On the final night of the trip, the drink charade ensued wherein I ask “para una jugo de pina porque yo no bebido alcohol.” She instantly wanted to know where mine came from!
At dinner the night before, my husband and I went to have a sushi date at the hotel. The lighting was romantic and ambient, though I could still hear the music vibrating down below in the other open-air restaurant. There were multiple sources of light from a table reader, that he politely asked to turn off, a blue light for the decor and overhead lighting. It made me feel so ill. As soon as we got our food, we had to ask for the check and head home.
Despite all the fears and newfound difficulties I experienced as a result of surviving my tumor, I had a fantastic and enriching time with my husband on our Costa Rican honeymoon. I hadn’t thought much about the woman when I got home until I received an email from her a week later titled, “Hi Sarah it’s (____) from your Bike Trip!”
“Hi! My kids told me you wrote a book,” she began, “so I started reading it.”
Then she went on to tell me that:
I’m a three-time brain tumor survivor and still live with a tumor to this day and have done chemo and radiation. I was diagnosed 21 years ago when I was around your age. I’m on anti seizure meds and have balance issues. That’s why I can’t bike! I do the best I can to keep up with my husband and kids, so this trip was a big deal for us.
I was speechless. Flabbergasted. Awe-struck. I wrote back to her:
I feel like the universe was meant to bring us together on that trip. I’m so shocked to find this out and I’m so honored I was able to share the trip with you. You and me being brain surgery survivors and fighters together was right under our noses the whole time and we didn’t even know it.
She wrote me back:
I’ve surpassed the odds for someone with my tumor. Life expectancy is 7-10 years and I’m still here at 21! It’s so hard but I manage. I’m usually very open about my situation but I didn’t want to mark myself on the bike trip as a liability. But I don’t need to be anonymous now. I have a lot of neurological problems so I haven’t traveled alone. It’s really hard not to be able to just get on a plane and go wherever I want. But maybe it’s time I tried! I could start by going with a friend or family member and share my location while I navigate through the airport to the gate with airport disability assistance. Keep sharing your travel journeys.
The entire time, the small well-groomed woman who wasn’t biking wasn’t a posh-Jersey-mom, she was a warrior of epic proportions. A survivor. An ally. And now, a lifelong friend.
All those moments I was living fearfully in my secret internal reality, she was experiencing her version of these invisible cognitive limitations too. The alcohol. The overexertion. The lack of sleep. The social awkwardness of hiding a massively important part of your true identity not to upset others.
I can’t believe we were traveling as allies in solidarity without even knowing it. I couldn’t have asked for a better honeymoon than meeting a family that understands our existence, because they’ve survived their own version of it.
Traveling with a brain tumor, or as a brain tumor survivor is brave and has risks, but worth the reward, if done so in a safe environment surrounded by allies.
And when I travel, time and time again, despite my fears and limitations of being human, kindness, hope and a greater sense of belonging in the world always finds me.
