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Defensive Scooter Driving At Disney World With a Chronic Illness

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Beep, beep, beep! Look out — it’s the sound of my electric scooter backing up. The sound called attention to me exactly like I didn’t want.

I had hit the side of the wall of the line I was in at Disney World. Hitting the side was enough attention, but the beeping sound made everyone turn around and look. It made me self-conscious because I knew I didn’t look like I needed a scooter. That’s what happens when you have an invisible illness.

What were they thinking? Were they wondering why? Were they judging me? I felt like I needed to stand up and make a group announcement to explain why I was riding a scooter through the park and in line, to justify it. But maybe it was more me than them. See, an electric disability scooter isn’t my normal vehicle of choice, but I have chronic Lyme disease.

In stark contrast to what I couldn’t do just four years ago, today people who meet me have no idea I live with Lyme. They probably would never guess, and that was all the more reason I didn’t want to rent that darn scooter at Disney World.

I can walk. I can even get on my treadmill and walk fast (it’s good for me, in fact). I can balance and wear heels for short periods of time. I can even ice skate. I’m most excited that I stay awake all day too. But I cannot stand in a line for long periods of time. My neck, back, legs, knees and feet hate me if I stand in lines. I just don’t have the stamina.

My Lyme disease means there’s always something that hurts on my body, usually it’s my head, neck, arm, back and hip. They’ve diagnosed me with lots of things like osteoarthritis, fibromyalgia, Sjogren’s and (mis-diagnosed) lupus in addition to my Lyme. These days I can ignore most of my issues since I’m used to them and on recovery maintenance mode, but just a mere four years ago, I was spending about 16 hours a day in bed. I couldn’t stay awake, I couldn’t think and I couldn’t do much of anything, much less even contemplate going to Disney World without crying about what it would mean for my body.

Years ago, I thought life was over and I would just muddle through the next 40-50 years “surviving” each day and not being able to participate. Travel was painful, I was always too tired to do much, and it was hard for me to physically participate in the activities I wanted to with my family. So when we decided to take the kids to Disney World this year, I was worried I couldn’t stand in line. The prospect of the amount of pain that I would be subjected to made me want to just not go at all. I figured everyone would have more fun without me to drag them down. Plus, I didn’t want pictures of me in a scooter because I wanted to believe I didn’t need the scooter. I didn’t want anyone to know I actually had used a scooter.

The week we went to Disney, my right hip was acting up as usual, my head could only turn about 45 degrees to the left, my frozen shoulder was sending shooting pains, my left fourth and fifth fingers were numb, and my right arm couldn’t straighten all the way. I told my husband I was going to get one of those canes that had a flip out seat, and I got the “That won’t work” look. I didn’t really know how I would use it when my right arm wasn’t working and my right leg would need the cane the most. Besides, I would have to take it on the airplane and it didn’t fold up.

My husband suggested a scooter because we had used it on our trip to Chicago, and he thought the cane would be too heavy and didn’t totally fix the no-standing issue. Internally I was feeling self-conscious — I didn’t want people staring at me wondering why someone who “looked fine” needed a scooter.

I asked my doc what to do at my next appointment and he said to rent a wheelchair, but I resisted with all sorts of excuses. He finally very sternly said, “Do you want to go and enjoy your time or be miserable? Rent the wheelchair!” I knew my family would not enjoy pushing a wheelchair, so that’s when I finally acquiesced to getting that scooter.

The crowds were big during spring break, but the Disney staff was always kind to me. It was peak season at Disney World and everyone seemed to be in a rush to get to their ride faster than the next person.

Disney World Day 1: I practiced defensive scooter driving and smiled at people crossing right in front of my path.

As I rode uphill out of the stroller parking area after our time on the new Avatar ride, a Disney cast member was bringing two strollers in. She smiled at me and waited. At the same time, a man came rushing to weave through between us, right in front of me. The cast member put her arm out, gave him “the look,” and reprimanded him, “Sir, stand back and let her through!” Thank you, Disney cast member! It’s nice to have someone stick up for you.

Disney World Day 2: I contemplated writing a scooter etiquette book so everyone could co-exist better.

Texting is a bit of a problem, especially since there are no lanes to keep you on your path like a highway. It leaves people unaware of a scooter coming right at them or trying to cross.

The back-and-forth lines for the rides were sometimes difficult to maneuver. That’s where I hit the walls the most. Those turns are pretty sharp and from the scrapes on the wall, other scooters had hit the sides too.

Disney World Day 3: I was about ready to let anyone who dared to jump in front of me just bite it, though I didn’t follow through on that.

Most people were kind, but kept cutting me off in their rush to get ahead of me. Many were almost clipped by my scooter.

I even played chicken with a stroller a couple times, and once muttered, “I dare you to go; I dare you to go; I dare you to go…” under my breath as someone crossed right in front of me, seemingly unaware of my electric scooter’s presence. I didn’t slow down. She was almost hit and she never noticed. She never even turned her head. Luckily, I didn’t hit anyone, but I did run over my kids’ feet a few times.

While trying not to run into people was definitely the biggest challenge scooting around Disney World, I have to say they’ve done a good job making things scooter accessible. It surely made my vacation a lot less physically taxing.

In the end, I was grateful I got the scooter and no one gave me the dirty looks I imagined. I didn’t feel judged. I noticed many others who didn’t “look like” they needed a scooter as well and that made me feel more comfortable. Perhaps the world is getting more accepting of invisible illnesses and disability? Let’s hope so.

Originally published: June 6, 2018
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