Get out of town. Traveling with MS.

6 Annoying Reactions To My 72 Hours In A Wheelchair

The Banker and I have just returned from a fantastic long weekend in NYC. In my day to day life, I use a walker or cane, but long days of traveling call for my convertible walker/transport chair, Optimus Prime. So, for 72 hours I had the concentrated experience of hearing the questionable things people feel compelled to say when they see someone unexpected (young? pretty? cool hat?) out for a push in the park. Here’s a sampling of some of the mouth garbage we heard.
    Seriously?



1. “Can she walk a little, or..?”
 

The first questionable comment came at airport security when the dude in charge of scanning our bags decided to speak to The Banker instead of me. I’m not sure why he assumed my ears, mouth, and brain didn’t work, but it felt so satisfying to loudly declare, “You can speak directly to me”. He apologized. 

2. “You have to go across the street to the second floor”
We arrived at the Shubert Theater on Broadway, full of excitement to see Bette Midler in Hello, Dolly. Fortunately we got there early, because when I asked about the bathrooms I was told the ‘accessible’ ones were across the street. On the second floor. Of a busy restaurant. It would have been nice to know this ahead of time. Like, when I booked accessible seating for the show. There would be no champagne at intermission. 

3. “Nice seat”
In addition to those who talk to wheelchair users’ companions instead of engaging directly, there are those who infantilize and treat you like a little kid; who will touch you and pat you on the head. During my dry intermission, a woman approached me, rubbed my back and told me I had a nice seat. Like I was 5. Was she just trying to be nice? Maybe. I don’t care. This is weird. Unless you’re my mother, please don’t touch me and there, there me. You don’t know me. 

4. “Esti intr-un scaun cu rotile”

While rolling down the street, an old Romanian (probably?) woman rushed me saying something along the lines of the above. Technically, I don’t speak Romanian but I’m pretty sure she was saying “You’re very beautiful.” Look it up. 

5. “That’s the best way to see New York City.”

At the end of a long day, in the elevator at the hotel, a weary woman looked at Optimus longingly and said the above. The Banker was not having it and told her so. She doubled down and continued complaining about her sore feet. The Banker told her not to complain about walking, to someone sitting in a wheelchair. Like, duh. This seems pretty obvi, but you’d be surprised at how many times I’ve heard some version of this. Lucky for her, we arrived at her floor and she left the elevator in a huff.

6.This would have been a lot easier if you could stand.”

Oh, really? Please, tell me more about how this affects you. This pissy comment came from the crusty TSA employee who’s job it was to give me a pat down/deep-cavity search at airport security. She seemed really put out that I couldn’t balance without a cane. So, I made a scene. 


Despite this rant, I’m not actually a bitter, old, wheelchair lady, hell-bent on politically correct language. I get it. I’m different and for some reason, people need to point that out. I’m still getting used to this new version of myself, and the reaction it provokes in others can be frustrating. I’m learning to roll with it for the most part, but  I don’t think my big, loud mouth is ever gonna let it slide when it’s way outta line (TSA lady, I’m talking to you). 

Traveling with MS requires a little extra planning and patience but it’s worth it. And, it wasn’t all side-eyes and throwing shade. We had many positive experiences. We encountered one NYC traffic officer who was exceptionally friendly and helpful, an excellent ambassador to the city and others who were eager to make sure we had a comfortable and easy time in the city. 

Mad love to The Banker, who is a pro at navigating OP through the city, in and out of cabs, boats and bars and never, not ever, makes me feel like any of this sucks for him. 

New York, I still love you.

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So, you want to know what’s wrong with me?

But like, what’s wrong with you?
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. 
 
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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Sitters are Quitters and other lies

The Banker and I have just returned from a much needed beach vacay. I’m not on good terms with winter and if I’m gonna get through it, a healthy dose of Vitamin D (that D is for daiquiri) could be my saving grace. The morning we left saw a light dusting of snow and a scary patch of black ice en route to the airport. It was time to get the eff out of the 6ix.  

But, wait a second. Isn’t heat hard on MS?

Guys, everything is hard on MS. 

MS is like a buffet of four thousand individual diseases. MS related heat intolerance is called Uhthoff’s Syndrome. Sidebar: People who discover diseases and then name them after themselves. Is that the most messed up thing ever? I would have called this something like Magic Mind-fuck Syndrome (MMFS) or Let’s Also Ruin Sunshine’itis (LARS). Here’s the dumbed down version of how I understand it. Where there’s existing damage/myelin loss, nerve conduction craps out when body temperature is elevated. Messages that may get through at normal temperatures can’t travel as efficiently when they’re all hot and bothered. As little as 0.5 degrees of increased body heat can impact nerve conduction and make you feel like you are relapsing. That means weather, showers, exercise and even having a fever can all wreak havoc. It’s not just ‘Ugh, I’m hot, I feel tired’. It’s more like ‘Ugh, I’m hot, I CAN’T FEEL MY DAMN LEGS.’ Scary shit. That said, allowing yourself to get fired up is not considered reckless. The assault only lasts as long as the heat source and exposure causes no permanent damage. Fun Fact: Before fancy MRI machines became de rigeur doctors actually diagnosed MS with the ‘hot bath’ test. 

So, why would I want to put myself through this? 

Because I still love the beach and the ocean, margaritas and mariachi bands. It’s not ideal but I’m not willing to give up the guac. And the alternative was to stay home and think about how cold I am. Plus, I felt like The Banker deserved to see my bare legs one last time before I retreat into semi-hibernation. 

Knowing that just being in the heat of Huatulco meant I could count on my already weakened legs being even weaker, combined with the reality that lately I’ve been struggling to get half a block with a cane, we came up with a two part plan.
  1. Low Expectations
  2. Wheelchair Everywhere
Of course we still expected to have a fab time. Low expectations meant only that we wouldn’t plan excursions or anything more ambitious than dinner. And if that felt too hard? Room Service por favor. The purpose of our trip was to be somewhere together and to relax. We would pursue those goals and those goals only. No swimming with dolphins or visiting Mexican coffee plantations. 

Wheels everywhere meant just that. We negotiated this before we left so I could wrap my head around it but also to avoid having to assess its need on a daily or even hourly basis. I didn’t ever want to ask for the chair nor did I want to be asked ‘Is today a wheelchair day?’ I knew it would be easier on me if it were just part of the routine without constantly checking in to see how I was coping in a beautiful but somewhat hostile environment.

This would be the most concentrated period I’d ever used a wheelchair. I had a list of concerns. 
  1. A wheelchair would make me less pretty (eff you, Kylie)
  2. It’s a mega drag for someone (The Banker) to have to push me around
  3. People will stare
  4. Sitters are Quitters

Just a little light existential pondering while staring into the Pacific. 


But then everything looks sexier under a palm tree.

Wheelchairs make you less pretty
My vanity doesn’t take vacations. If anything I ramp it up a notch on holiday. You’ll never convince me I’m as much of a babe being wheeled into a restaurant as I was waltzing in on stilettos. I can feel sad about that so please don’t give me any inner beauty bullshit. I will however meet you halfway and agree that what’s even less sexy is tumbling over in said heels and landing on the cheese trolley. 

I realize how trivial this might seem and I don’t care. MS means having to renegotiate my self-image from time to time. I also recognize that there are some pretty hot bitches on wheels out there. I’m encouraged by you and thank you for not hiding your sparkle. (I’m talking to you, Darce).

It’s a mega drag for someone else
If it sucks to push someone around then I told myself the only thing worse would be pushing someone around who’s freaking out about being pushed around. I don’t like being dependant (Can you take me to the bathroom, please?) even if The Banker is the most considerate and accommodating man in town. On the other hand, get over yourself, woman. Because the real truth is, what’s even more of a drag is slow walking in the heat with someone who needs your arm for support and to stop every few minutes for a rest. It’s more of a drag to finally reach your destination but have your day cut short because there’s no energy left. It’s taken me forever to realize this. 

People will stare
Okay, so this one is true. To be honest, I didn’t really notice (probably because I’m LB, guys). But The Banker noticed and he took the opportunity to stare down every single slack jawed gawker who dared to raise an eyebrow over the pink bikini in the wheelchair. Personally I thought I was pretty boring. Most people were more interested in the bartender at the swim up bar. Or the overly tanned burn victim. Or the old guy in the white speedo. I could hardly believe that after a week in a chair not one person asked me what was wrong with me.

Sitters are Quitters
I might struggle with this one the most. I have translated the bullshit idea of ‘Use it or Lose it’ into intense pressure to remain upright at all costs. I have drunk deep from this toxic Kool-Aid, and made really poor choices under the misguided belief that the more steps I take the more steps I will be able to take. The frustrating reality is that this simply isn’t true. I don’t have nearly as much control or influence on this disease as I would like. I believe in exercise and physio but persevering in this Sisyphusian manner is self-defeating and demoralizing. It’s what lands me in tears on the sidewalk one block from home calling for a ride because I can’t walk any further. There is no need for me to ever let myself get to that point. 

I’m smart enough to know that rather than being an actual limitation, the wheelchair, like my good friend Cathy is actually an enabler, a tool to be used to grant me access to life rather than an extension of my physical body. I get this. I just need to keep reminding myself. Most vacationers travel to escape their troubles but in a lot of ways I have to confront mine. It helps a lot to see the sun. I point my face in that direction as much as possible. And when it’s too cloudy, tequila.



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Scotland

Tomorrow The Banker and I will hop on a red-eye for a quick jaunt over to Scotland. That sounds so glamorous and cosmopolitan. Of course by ‘hop’ I mean throw back two glasses of wine at the airport bar before shuffling over to pre-board with grannies and frazzled parents. By ‘red-eye’ I mean subject myself to a serious case of time travel induced barfiness. I fully expect to be met at the gate in Glasgow by two or three Dementors who will suck what remains of my life force from my jet-lagged and weary body.
Castles, whiskey and food dares, oh my.
Many, if not most people travel to enjoy a reprieve from their daily struggles and stressors. But for those of us whose biggest worries are health related, travel is anything but an escape. Traveling exaggerates every single underlying symptom and physical challenge we face. It is hard. There is no vacation from MS. In fact, MS would be a lot less glaring if I were to just throw back my wine on my comfy couch and binge watch House of Cards. Negotiating cobblestones, strange food, weird bathrooms, lack of sleep and inaccessible transit sucks. There will be frustration. There will probably be some tears. There will most certainly be whiskey.
So, aside from the drinking, why am I so excited? 
Despite all of this, I freaking love travel. It is in my bones. And I especially love to travel with, and to, my favourite people around the planet. I will endure all of the associated unpleasantness because it is in seeing new places and experiencing the unfamiliar that we are awakened. We must keep moving, keep having new adventures and creating new memories with the people we love, who challenge us and help us to better understand ourselves. Every time we travel we are changed a little bit for having had the pleasure and the pain.


I live for this. Bring it, Dementors.

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