Coming home after a day of touring Cinque Terre, Italy, I felt sick and I knew it wasn’t from the amazing homemade lasagna from dinner. I felt sick because an entire day of inaccessibility and wheelchair related hardships left me… disabled. Defeated.
There’s no part of Europe of what we’ve seen that is truly the same level of wheelchair accessibility as in the states, simply because there’s an unlimited amount of history to preserve and a limited amount of space to do it in Europe. So I shouldn’t have been surprised or troubled that this part of Italy was pretty ruthless for me, this wasn’t our first rodeo with inaccessibility. But coming back to our Airbnb with a bathroom too small to turn around, with a part of one pant leg wet from where my catheter leg bag had spilled and listening to Dusty and his friend Doug who’d come along laugh about the views from the hiking trails they’d climbed that day… all made me want to crawl in bed and declare defeat.
There’s a marked difference between being disabled and feeling disabled.
There are some experiences I’ll recall where it’s hard for me to remember whether or not I was in a wheelchair during that time, my limitations were so irrelevant. And then there are the times where I feel every inch of my disability in how unwelcome and isolating being a chair can bring. When everything is on steps, there’s no clear pathway in sight and every person who passes stares, the exposure I feel is almost violating. But when I feel all of that and it’s paired with some of the physical pains and bodily complications that traveling brings, the only word that can encapsulate the defeat I felt was that in that moment I just felt… disabled.
This is where Dusty walks a fine line between caretaker, spouse and simply a friend. He tries to address the inaccessibility of place by pushing me when I want it, even when that means getting a “wheelchair workout” by pushing me up steep hills until his calves burn. But in between panting breaths, he’ll try to encourage us into still enjoying the evening together and then in the midst of all that he’ll give me a sweaty kiss to let me know everything is going to be alright.
On this day in questions, the three of us had tried to have dinner in the furthest southern Cinque Terre city of Riomaggorio. I had read many TripAdvisor warnings about how inaccessible the streets and hills of Cinque Terre were, but because we’re young and dumb we thought we’d give it a shot anyway. First problem we encountered was the trains of Italy have three large steps to enter or exit the cabins, no exceptions. So Dusty and Doug each grabbed one side of my chair and lifted me in and back out when we arrived. By itself, that’s inconvenient but not too bad. Standing at the platform of the station, we saw the only exit was through a tunnel underneath the tracks and this station didn’t have an elevator. This is a common problem when we travel, so we knew the ropes and Dusty carried me while Doug suffered with my chair.
Under the tracks and back up on the road, the path was dark but we could hear music and people down by the water. But the path led up. Straight, almost climbing-steep up. Dusty got behind me , grabbed my handlebars and ground his feet to start pushing. Up that hill, around the bend and then down just as steep of a hill. Then back up. Then back down. Doug and Dusty joked as Dusty panted, “So the number one thing I’ve learned about Italy is that it’s hilly,” Doug laughed. We paused at one of the only lit buildings we passed to ask where we could find an open restaurant and were directed to keep going down to the water. If we thought we had seen the steepest of these hills, we were proven wrong when we looked over the edge to the rest of the path leading down to the water. By this time Dusty’s shirt is soaked through and it’s a law of nature that if we continued down in elevation, it would only mean an even worse climb coming back up to get home.
The weight of how much trouble my chair was causing us to be able to simply eat tonight was wearing on me; this wasn’t fun anymore and I wanted to get back to our Airbnb home. We turned around and began the trek home. Luckily, we passed an open little restaurant nook and gratefully stopped to eat. The food was delicious, authentically homemade Italian with overflowing wine and sultry jazz in the background. I left with some heart lifted and we were halfway to the train station. But then something in my stomach turned and I began to cramp something awful. This wasn’t a direct result of the food, but a stomach complication related to my paraplegia that flares when I travel. I gripped my stomach and told Dusty that we needed to get home. The station was deserted and we soon learned why; there wouldn’t be another train for 30 minutes. At this point Dusty is getting nervous; I haven’t needed him to be the caregiver that he was at the beginning of my recovery in a while, but he can perform whatever’s needed in a pinch.
This is where I’m learning how to ride this delicate balance of knowing how to take care of myself and not necessarily have to worry everyone else when something goes wrong. Essentially, I’m learning how to be independent with my health when it’s not a safety concern. And I knew this stomach problem was not a safety concern, just incredibly painful but I’d been through it before. What I didn’t want was so spend the 30 minutes waiting with a worried Dusty hovering over me and our confused friend not sure what his role would be. So I sent them on a quest to find gelato and I practiced my breathing to manage the pain.
The train eventually did come and while we had other wheelchair related setbacks (the elevators at the next station closed to the public at 10pm and while we could see they could still work, the doors were locked to us when we arrived at 10:05), we did at last get back. I was able to take care of my medical needs and get ready for bed while Dusty and Doug went walking to hunt out pizza and wine, but as I lay in bed I simply cried. Staying optimistic and positive in the face of continuous difficulties not only requires superhuman strength but an incredible amount of energy as well. And I was just plum run out.
It’s during those times I’m faced with questioning whether I’m really ok or not with my new life in a chair. In the light of day, I don’t see how questioning this reality has being fortuitous but that night I really did ask myself that question. And truly, I couldn’t come up with an answer. Am I okay with this? Well sure. And of course not. And emphatically yes. And knowing that it truly doesn’t matter whether or not I’m okay because it’s how I’m going to wake up tomorrow. It’s okay when I’m frustrated or even devastated that my life’s in a chair and it’s equally okay when I enjoy my life regardless of if I’m standing or sitting. What I am capable of doing is choosing. I choose to be happy and that night, I chose to fall asleep happy that I was in Italy. I’m not going to waste time seeing this world choosing to be unhappy that it’s not accessible.
The world is not accessible, but our minds are free to choose how to appreciate what the world has to offer instead.