Being seen is an incredible thing when MS makes you feel invisible
A simple act of kindness by a stranger offers lessons for us all
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.
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.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
I completely understand where you come from and I really feel good when someone notices me as well. Thank you for your post.
Thanks Yvonne. It's odd, I don't feel ignored, just unnoticed. I don't feel like they're the same, but maybe they are. It feels good to be noticed but I don't know if it would feel the same to simply not be ignored. Thank you for the future column idea
I so enjoyed reading your article, "Being seen is an incredible thing when MS makes you feel invisible." You put into writing the same way I've felt since being diagnosed in 1982. I just realized I've been living with this MS for over 40 years! The last time I was treated for a flare-up was 2003. Sometimes I just have to vent! I'm a retired engineer and my wife is a retired Physical Therapist. She knew I had MS way before I did. Being married to a PT does have its benefits! I am at the secondary progressive stage. The last time I was treated for a flare-up was 2003.I hate having to explain why I use the hanicapped parking when someone will say, "But you look fine!" To look at me in public you might see me walking with a cane. My primary disability is cognition. There are times I wish I could look like I'm disabled! I lost my job and had to stop driving and taking way too many meds for symptom management. But life goes on and I'll try to remain positive, as I'm sure, you do.Until later, Darrell
Thanks Darrell! Like you, my wife (a nurse) also knew something was amiss with me before I did. She's also tougher with me than she probably ever was with her patients.
I live in Greece (europe) but I feel everything you write is about me (of course you write better than me) . I feel that is going on in my life. I think that young peeple understan better than older peeple our group. Thank you for writing you stories and advice.
Thanks for reading Magda! And thank you for your comments. If you saw my writing before the editors fixed all my errors you wouldn't say I wrote better than you.