The theme of the first months after my accident was to approach everything with an attitude of “why not?”. Why not go back to college? Why not go on road trips? Why not go swimming? I wore a can-do attitude on my face like it was my job. Dusty, the hubs, is an engineer by trade and by character; if there was something that I wanted to do, he designed or created the gear for me to be able to do it. From his creative heart, he’s outfitted my chair with military style belay clips to hold my keys, secret pouches for my catheters and an emergency blanket under my cushion to protect my legs when it rains.
But with that can-do attitude comes the nearly-always painful experience of having my limits stretched. Stretching the energy limit has been a constant part of traveling here in Europe. Many paraplegics like myself have a system of energy conservation; my spinal cord injury causes me to burn through my energy faster than most. About halfway through a day of traveling will burn me out, even if we haven’t been wandering the streets the whole time. In college, I learned how to take power naps in empty classrooms before trekking it across campus for my next class. That skill has been tremendously helpful when riding the trains/buses/planes/cars we take for traveling here in Europe, but more often than not I’m still beat by 3p.m.
Eating well, staying away from overly processed food and eating a travel diet of lots of fruit, drinking an addicting amount of coffee and pounding water help me to keep my energy up. What I had to learn, however, was to let go of the main reason I was continuing to push myself to some unhealthy limits; I was afraid that by not having the energy to keep going that I was going to be a disappointment. To my husband, to myself, to the whole disabled community, it didn’t matter. I was afraid that if I stopped, I would be letting someone down.
Well, that’s just downright silly. But most of our innate secret motivations for how we do what we do are generally silly. What I was doing, pushing myself to exhaustion just so we could see that next infamous tourist attraction from some ancient times, was dangerous and foolish. I was already letting myself, and my husband, down by thinking that my own well-being is something to gamble.
A few months ago, we were taking a spur-of-the-moment train ride to Berlin. We didn’t have plans for the weekend and Berlin was a place we wanted to cross of our list. I didn’t have FreeWheel yet, the piece of adaptive equipment that lets me go over cobblestones smoother, and we were still hostel-hopping in the dorm rooms. The train ride turned out to be much longer and much more crowded than we were expecting. Getting off and on some of the trains isn’t impossible, but it’s bit hard and we had to transfer twice. By the time we got to Berlin, my head was pounding and we still had to find I had booked last minute. Later that night we’re finally in a crowded dorm room of messy suitcases everywhere and spooning in one of our tiny twin beds when I wake up to someone vomiting. Our dorm mates, the owners of all the clothes strewn everywhere, are British girls on holiday and one of whom was sounding like a beached seal dying in the bathroom. Another was drunkenly repeating herself apologizing over and over again to the also-awake Dusty. The third, fourth and fifth were continuing to drink and laugh uproariously girl #1 puking. Thankfully, we were able to change rooms but it cost a few hours of sleep to do so. The next day, we tried again and perked up our smiles to the drizzling grey skies of Berlin and opened our rented guidebook. We saw sights, some were stunning, some were representative of World War II and were sad, but all were impacting enough to make us glad we had made the trip. I began to fade, my limited amount of energy already waning from the loss of sleep the night before. We got lost once and then twice and then became so turned around we made one giant circle throughout the center of Berlin. I had been having trouble with my wheelchair all day; one of the caster wheels would stick and it would jerk my chair in one direction. Somewhere around seeing Albert Einstein’s statue at the university in Berlin, my chair jerked me so violently that I toppled onto the wet cement. And that’s when I learned that I’m not invincible and I should maybe listen to my limits.
We came home early from Berlin. Actually, I’m pretty sure I remember the conversation going, “Julia, are you okay? I’ve got you, come on,” “No, I’m not okay! I hate this city! The history is sad and they have dumb tourists who puke everywhere and it never stops raining! I can’t do this anymore, let’s just go home”. Now, it retrospect, if I had slowed down, if we had gotten a hotel room, if we took an hour at a coffee shop for me to get a quick nap, if we had done any of those we wouldn’t have just jumped on the next train home. But everyone learns some way and Berlin taught me that when I don’t listen to my limits, I can’t enjoy anything I’m doing. See the full album here