Traveling to Ireland

I like leaving for a trip, but this time I like it even more because I am leaving behind the many reminders of my illness and of a future I still grapple to embrace—the five boxes of medication I start when I return from my trip. The outside walker. The slanted stacks of papers from the medical maze. The unopened and unassembled shower chair for when standing showers becomes too difficult. The plastic arm to help the ventilator pipe fit onto a wheelchair.

But I’ve never before attempted international travel while terminally ill. After check-in and a last long lean into my mother’s arms, my body buckles into a wheelchair. Surely this is not my first time being wheeled around. I’ve been in strollers, on bike handlebars, in wheelbarrows. But today it is my adult independent self that is asked to sit and be moved by someone else. For a moment I want to brace—fasten a seatbelt or hold the handlebars. But Kim, the person at my back, pushes just slowly enough for me to trust the ride.

My beautiful body reads the different floor textures like braille. The coaster-sized porcelain tiles with their wide lines of grout reverberate like cobblestones. The expansion joints in the terrazzo floor are so delicate, I need to listen with my entirety to feel them. The aluminum plates that hide underfloor cables make for hiccups in the ride. And the rug feels soft, almost like sand slowing us down.

At the gate they need me to check my carry-on, but my ventilator is in it. “Take the ventilator out,” they say, “and then check the bag.”

“No,” I say, “the ventilator pipes are too fragile and will get damaged in my soft-shell bag.”

“Okay, okay. You can have it on the plane.”

Thank goodness I can still speak.

I didn’t book my tickets for this trip, the school booked them for me. They put me on the same flight as Donna, another Carlow student. We have a six-hour layover, and Donna had booked a lounge suite where we could pass the time. After we disembark in Philly, I see Donna only briefly. The airline had checked her bag through from Pittsburgh to Dublin. But they told me that they couldn’t book mine through in the same way. I would need to pick it up in Philly baggage claim during the layover, then recheck it to Dublin. With a wheelchair.

I tell Donna that I must get my bag before meeting her at the lounge. Then Breeze the airline assistant wheels me away.

We get my bag at the luggage claim and take it to the airline that brought me to Philly. “Oh no, sorry,” they say. “This ticket is two separate bookings. We can’t check your bag, you must go to Terminal A.”

Breeze whisks me away and suddenly we are at security. “Shouldn’t we go to Terminal A first?” I ask.

“We’re going there,” she replies. I’m confused. In my mind you check your bag before you go through security.

TSA screens my large bag, the one I’m planning to check. A blonde guy with blue gloves works his way through my belongings, and I feel angry as he unwraps my stuff, opens my candle and smells it. He takes out the protein powders to screen them. Sets aside my protein shakes and takes apart my blender.

“But I want to check the bag, not take it on the plane,” I say, confused.

“But you can’t take these through this security point.”

But I don’t want to go through security. I just want to check my darn bag and then go through security without it. Another lady jumps into our confusion and amplifies it with unsolicited advice. My eyes burn with frustration and simultaneously I feel ashamed that something so small can make this white lady cry.

“Are you okay?” asks Breeze.

“Yes, yes,” I say.

TSA man restates the facts. “Either you leave the shakes and blender here, or go back and check your bag.”

We turn around to go to Terminal A without going through security. “How do we get there?” I ask.

“We walk,” Breeze replies. Walking turns out to be a rotten task with me, two bags on my lap and Breeze—weighing no more than a suitcase herself—tries to push me in an old wheelchair while also dragging my 46-pound bag behind her.

“Wait Breeze,” I say. “I can walk. Let’s work this out.” I get up and push my carry-on bags perched on the wheelchair. Breeze brings the large bag. If I had studied Philly’s airport, I would have known that Terminal A is quite far from Terminal F and that a shuttle would have been a smarter plan. Maybe not for a fit self, but definitely for this self! I stop a couple of times to catch my breath.

When we arrive at Terminal A, hot and sweaty, I am well positioned for a temper tantrum. It’s nap time, I’ve not had lunch, I am thirsty and tired. If you have ALS, it is important that you rest, hydrate and eat regularly. I can’t wait to check this bag, slip through security to food, naps and water.

But bad news awaits. The airline that must check my bag to Dublin won’t open for two-and-a-half hours. The terminal is a single room, with no bathroom and nowhere to buy food. Since Breeze and I can think of no other practical option, she leaves the wheelchair with me and goes on with her day.

The first airline’s job to hand me over to the next airline is done. I take my place on the fake leather seat and watch my mind throw a temper tantrum.

If I was able-bodied I would have found a way out of there to food and water, at least. But I am not. Our world is not set up to take genuine care. The first airline, knowing of my condition, hearing my request to book my bag through to Dublin and my need for a wheelchair, did not think in terms of care. Even though checking a bag all the way through was possible—my travel companion with the exact same travel plan had done just that—Breeze (an employee of that airline) was not empowered to think strategically with me.

And so I landed in the seam, in the crack between two airlines who had done their duty, and who had no further responsibility toward me.

What is the impact of landing in this unsupported and unseen no-mans-land? The lack of water makes my mucus thick so I can gag on it. It worsens the fasciculations in my body, making it harder to sleep. And contributes to constipation and ass-figs (also known as hemorrhoids). My body hopefully meets its need for protein and calories by taking from my belly fat rather than muscles or organs. My tiredness will be passed onto my future self. (And it was. I was so exhausted upon arrival that I could hardly muster the energy to chew my sandwich.)

All of this is manageable. At least this time and for this person. But what about all the others who have slipped through the cracks?

Once I stood in front of a glass case in the national history museum of Mexico, looking at a figure carved out of rock. The description said that once very, very, very long ago, people who were born with Down’s Syndrome were considered gods. Imagine that! Imagine if tomorrow everyone on the margins woke with garland of flowers and prayers and incense around them. Imagine their joy as they stepped or rolled or stumbled into a world so tightly woven together in reverence for life that they never feared slipping through the cracks ever again?