So, you want to know what’s wrong with me?
19 Comments / Get out of town. Traveling with MS. / By Tripping / November 1, 2016 December 10, 2021
I’ve just returned from the most fantastic vacay to Spain and France with The Banker and Optimus Prime, my sexy new sidekick and cool, convertible rollator.
This trip was my first time traveling with Optimus and all three of us were nervous.
The Banker: “Will it be hard to get in and out of cabs, train stations and airports? Will we be holding up traffic and pissing people off?”
Optimus: “Will I get thrown around by surly baggage handlers? Will I be damaged in transit, leaving my new BFF stranded and without assistance?”
Me: “What will people say? How will they treat me differently with my new entourage?”
These were among our excessively polite Canadian concerns. But in the end, we had no reason to fret. The Banker had practiced packing and converting Optimus and could do it in a slick 90 seconds. OP returned to Canada un-traumatized, with the exception of one inevitable Parisian dog merde encounter. And surprisingly, nobody said anything to me about my obvious accessory. Well, that’s not entirely true. I really did get some compliments on my awesome boots. I’m telling you, they are beautiful boots.
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| Optimus Prime is still a bit shy about being photographed. (Not pictured: my bad ass boots) |
I was grateful to ease into things with OP without having to respond to any raised eyebrows. We were out and about every day but my differences never came up in casual conversation. This was unexpected because it’s not the same here in ‘polite’ Canada. Sometimes it takes leaving our homes and experiencing a different culture to see things a little more clearly.
On this side of the ocean, I’ve been fielding questions about my deal ever since I started using a cane a few years ago, and it’s only ramped up since I began using a rollator. What’s wrong with your leg? What did you do? What happened? I get it. You’re not used to seeing people like me; young but using the tools of the old. For whatever reason, we feel we need to comment or ask questions. It’s like our collective discomfort around disability forces us to fill the air, to address the elephant in the room, or on the street for that matter. I end up feeling like I have to reveal personal information, explain myself. I end up feeling like I’m the elephant.
Why do we think we can make these comments to total strangers? Is it our general feeling of superiority over persons with disabilities? What do we really want to know? Maybe these comments seem benign; people just trying to make conversation. I don’t believe everyone who talks to me is a nosy jerk, but these interactions are not okay. These questions all boil down to “What’s wrong with you.”
“What’s wrong with you?” is not an acceptable ice breaker.
After two whole weeks of not being put on the spot with questions about my body, things changed as soon as we passed customs at Pearson when an elderly man gestured to my rollator and said, “I’m just glad I don’t need one of those yet.” (At which point OP rolled his eyes and was like, As if I would ever be caught dead with you.) What’s frustrating is, I hear stuff like this all the time.
I used to politely answer, putting the comfort of others ahead of my own, and feeling like I had no ownership over my personal health status. I felt like I owed everyone an explanation and even an apology, because it often feels like my clumsy presence is an inconvenience. I would insist that “It’s not that bad”, doing my best to make others feel comfortable in the awkward situation they’d unwittingly created. A situation where everyone you encounter first sees you and labels you with something negative, with a defect, and then actually says it out loud. Imagine your most personal struggle in life. Now, imagine that everyone you meet asks you to tell them what that is before they even ask your name. What would you say?
I don’t want to do that anymore. I’ve been experimenting with alternate answers and lately when someone would ask “What happened?” I would shrug it off saying “Genetics”, but that seemed like a cruel response when I was asked and found my mother standing next to me. So, yesterday, when a curious stranger gave me the up-down before declaring, “You’re too young to be using one of those”, Fantasy-Me boldly said, “You’re too old to be asking rude questions.” But, Reality-Me just didn’t answer. When he didn’t get the hint and kept questioning, I awkwardly walked away, muttering something about croissants. I still felt ill at ease, but I also felt good about having protected my privacy. He didn’t deserve this kind of intel, and by my refusal to give it, he could only label me as ‘bitch’ and not ‘MS patient’. Turns out I’m both, but it’s up to me to decide if you get to know that.
Later when I obsessed over what I should have said that would have left us both feeling better, it suddenly came to me. The answer that I’ve been searching for is so simple I can hardly believe it’s never occurred to me before:
“That’s a little personal; I’d rather not say.”
I can say it in my nice voice, with a smile, using the manners I was raised with and everyone walks (or rolls) away feeling good. It’s so easy.
“I’d rather not say”
In the mean time, maybe that excessively polite reputation we Canadians have is not an accurate stereotype. Maybe we need to take an example from our Euro friends. Drink more wine, eat more cheese, and ask fewer questions.
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Great article once again. I laughed out loud when you described walking away in silence from the person who approached you, and your reasoning for it. Gold. Your article made me curious as to whether you'd feel any differently if your interrogator also happens to have a cane, walker, wheelchair, etc. Also I wondered if, when you encounter others with walkers, wheelchairs etc., you have a greater, lesser or equal likelihood of getting comments and questions from them on your own assistive devices and the reasons behind them. So glad you had a great trip.
I was once questioned by someone with a cane who was recovering from an injury and assumed the same was true for me, so that got awkward but it really doesn't happen as often.
I should also note that I feel differently when kids have questions. I'm not always sure what to tell them but I think it's important to normalize disability and I don't think these questions come from the same place in children who are just trying to figure out the world.
So happy for you to have the opportunity to travel! When I walked with my cane I always wanted to say with a straight face "a ski accident on Mont Venteux". The last we "spoke" I was fine tuning my wheelchair order folding/rigid…tutti colori or black on black. I have just returned from a 2 week trip in Italy where ADA does not exist….but I still had a wonderful but challenging time. Only once did someone stop and ask me in Italian "so whatsa wrong with you". I don't speak fluent Italian but I picked up with the sign language and a few words this was the question. I suppose multiple sclerosis sounds close enough to sclerosi multipla. His answer in bocca al lupo. Ok I'll take it….good luck.
Possibly you need a bumper sticker that can be seen as you turn and flounce away…
Thanks for stopping by Karen. I love Italy. Maybe next year…
Like, one that's giving the finger?
Thanks for sharing, and what a great and simple response! I just booked a trip to Europe with the wife and 2 daughters (11 & 14)! We are going to London, then a cruise around the UK, and finishing in Paris. Not sure if I am going to get a rollator or just stick with the cane and rest often, but your post helped me remember that I can deal with whatever struggles good old MS decides to present me with on any given day. Thank you so much!
BTW, did you use OP as a pseudo-wheelchair? I like the idea of not having to hold everyone up when the legs say enough if I can "transform" (see what I did there) the rollator into something I can ride on.
I walked with OP until I got tired and then we flipped it into a chair and I was able to go all day and all night and when I felt like walking again we just flipped it back. We both agreed that this was one of the best trips ever. I was able to do and see more than I have in years (even before I started using a cane). I never once got frustrated and upset with myself for being exhausted, I guess because I never got too tired even though we did SO much. It was the first time in many years that I didn't feel like I was missing out on a lot of stuff. ( Shhh…Added bonus: wheelchair users and their partners get into most places for free in Europe and you don't waste time waiting in line.)
Have a blast on your trip. I'd love to hear about it!
A.
Good on you Ardra. As usual you have hit the proverbial nail squarely on its head. As overly polite Canadians we must learn grace in knowing what is polite conversation with a stranger and we can feel totally ok with telling people it's personal. A friend at a dinner party recently reminded us that it's also ok to say no thank you and not give justification. Canadians often feel they need to give three well structured reasons why they're saying no thanks and this is not true, it has simply become expected and should not be part of our social etiquette. Say no and feel entitled to make that choice for yourself. It's liberating.
That's a great reminder. Thanks for reading!
Yes!! I love this. I love you!
-SA
Also, I still think "genetics" is the perfect kind of poised snark for when your Mom isn't around. What a great read.
Wonderful article yet again. Now that I am in a wheelchair, total strangers feel it's OK to pat me on the head. Or start pushing my wheelchair for me. smh
Yes! I've had that experience too. Not the pushing but the touching. What the hell?
Thanks S. I love you too!
Glad you had a great vacation, and thanks for another great post. I had never thought to respond that way either to frustrating questions – but I'm going to do so now! This is great.
Hard to believe what that older (but certainly not wiser) guy said to you at the airport. Actually I
do believe it – I've been at the receiving end of similar comments and they're always a shock.
(Your sweet OP is perfect! We're trying to save up for one!) Thanks Ardra!
Barbara, NY
Barbara,
For whatever reason this comment was lost until today. Thanks for posting it, it made me re-read this. I was pressed about "what happened to my leg" by an unrelenting cab driver just the other day. Lately I've been brushing it off saying "it's a long story", cause everybody knows that nobody wants to hear a long story.
What does one say to rude Americans who glare at you (maybe he has resting bitch face?) the entire, agonizingly long, time you spend using your cane to drag your malfunctioning body across the lobby of your dentist’s office? I wanted to use my full arsenal of curse words, learned of course throughout my life from my fine Irish ancestors. Dude, really? Were you raised by wolves? Or perhaps owls, because your neck swiveled 180 degrees? I was extremely angry and a little frightened. I ordered my LifeGlider the very next day. Next time I will STAND, look you straight in the eye (at my full, nearly 6’ height) and unleash my wrath at your audacity.
Seems an appropriate time for a cell phone game. I really want to say “I am sorry that you are too stupid to be of assistance.”