Being seen is an incredible thing when MS makes you feel invisible

The kids had their spring break last week, so we loaded up and drove to Universal Studios in Orlando, Florida. I promise this column won’t be a review of the theme park and its accessibility (which was great, by the way). It won’t offer tips about traveling with multiple sclerosis (MS), either, although there are a couple quick things I’d like to pass along.

First, if you intend to spend all day in a wheelchair, a good set of cushions is worth its weight in gold. Second, the bench seat in our accessible van can accommodate three children — if they are calm, courteous, and respectful of one another. Third, despite the shining example set by their parents, when on a long car trip, our children are none of those things.

I should also point out that not all accessible hotel rooms are created equal. The time to figure out the best way to transfer to an unfamiliar hotel toilet is not when the need is great. It turns out that I don’t make my best decisions or listen to the rational advice of others when I’m desperate.

OK, enough of that. What I really want to share today is that I was seen by someone while driving around the park.

I know, that sounded like something a ghost would write. While I occasionally do make some eerie sounds, especially when I’m getting up in the morning, I’m not invisible. My wheelchair is nearly 400 pounds, and with me and my accessories aboard, I’m not really inconspicuous. Still, it often seems to me that I completely disappear in a crowd.

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When people seem oblivious

On the busy streets of Universal Studios, people frequently filtered in between my family and me. This is somewhat understandable. I do trail a little behind, both in order to keep an eye on them and so that I have room to stop before I bump into someone with my chair. In a crowd, I get that people might inadvertently cut me off by filling in the gap.

What baffles me, though, is when I’m blocked from doorways or access over curbs, or simply run into by people who don’t seem to realize I’m there. My wheelchair elevates, but I normally drive it in the lowered position. But even then, I’m taller than most children, and children don’t seem to have the same problem. If it’s not about being at eye level, maybe it’s about being in eye contact.

When forced to acknowledge my presence, most people seem genuinely surprised to find me there. A hasty apology usually follows, especially if I’ve been bumped into, or when someone realizes that I might want to use a doorway.

Once, though, a man stopped to let me pass on the street and simply said, “I see you.”

He wasn’t tall and blue (that’s a different park). He might have been talking to someone else. Perhaps he was separated from them when he let me pass. But when he spoke, he was looking at me. As far as I’m concerned, those words were meant for me. “I see you” suddenly meant, “I acknowledge you.” Or maybe even, “I’m aware of you.”

I don’t know who you are, kind stranger, or even if you were talking to me, but you made my day. You even inspired this column more than a week later, so maybe you made more than just a day.

Funny how awareness can do that.

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