8.25.2015

People Who Mean Well (and their miracle cures)

Today I received some advice, unsolicited of course, from someone who is neither doctor nor patient, but who knows some 'medical professionals'. It went a little like this: "I don't know if you've ever thought about your diet before but eating potatoes is really, REALLY bad for MS."

Over the years I've heard extolled the virtues of everything from costly and invasive surgeries and therapies in foreign countries to extreme diets to simple claims I should make sure it really is MS because 'drinking diet soda can produce identical symptoms'. Often I hear about the best friend who cured herself with an animal protein diet and just as often I hear about the vegetarian in complete remission. So, what's wrong with me? Why am I still sick?

In addition to pushy diet and intervention tips I am constantly instructed to 'keep fighting' and to 'not give up' because a positive attitude will for sure keep me out of a wheelchair. (You lazy, giver-uppers in wheelchairs apparently have no one to blame but yourselves).

All from people who Mean Well

Silent Killers


If only it were that simple.

The people who Mean Well are not my friends and family. Without exception they barely know me and I suspect, if questioned would be hard pressed to provide an even accurate-ish description of multiple sclerosis. The people who Mean Well are passionately convinced they have the answer.  

Here is a little of what they don't know.

Diet soda is disgusting.

And I am never not thinking about MS. Whatever the magic potion, chances are I already know about it. I have been on all the drugs, supplements and diets. I have sought out the best experts internationally and hopped on more than one plane to more than one country for tests and treatments. I know all about stem cells, bee stings, cobra venom and hyperbaric chambers, hookworms and hypnosis. I am an educated, informed and proactive patient. I know more about my disease than you do. 

Random stranger, I know you are not actually a patronizing idiot. I know you just want to help. But here's the thing. You don't have to fix me. I really do know you mean well. It's just that, rest assured if it were that obvious to not be this fucked up, I would already be doing it. Times ten. 

The people who Mean Well are not the worst people on earth, just the most annoying. In a world where everyone knows a guy or a guy who knows a guy whose gluten free sister cured herself with a trip to Lourdes it can feel frustrating to confront such an oversimplification of a serious problem. My serious problem. But how about I make you a deal? I will feign interest in the story of how your coworker has MS but is totally fine and when you tell me about the worst thing you've ever had to face in your whole life I will tell you how to quickly and easily solve it with a litre of cabbage water and whatever the opposite of aspartame is, because my great aunt Ella had your exact same problem and she totally fixed it with chia seeds and positive thinking.


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8.18.2015

Look better, be less of an asshole garbage person

I remember an old "look better, feel better" breast cancer campaign that helped women cope with chemo by providing a makeover and a new 'do. While nobody was suggesting any of these cancer patients needed a personality overhaul, in my case this has proven to be a welcome side effect to improving my appearance.

Looking one's best can boost spirits. What I didn't realize was just how much I genuinely behave differently based on what's going on with my hair. Turns out the degree to which I am put together is directly related to how sufferable I am. And sadly, looking like an insomniac beast person can make me act like, well, an insomniac beast person.

While I am mostly nocturnal I am not actually a beast person. In fact, I am all girl. I delight in dresses and makeup and pretty things. You wouldn't know this though, because most days I am at home, braless, in faded track pants, the shirt I slept in and a messy ponytail. When someone unexpectedly knocks at my door I turn into a stealth but frumpy ninja so they don't know I am home because I don't want to be responsible when they see me and turn to stone.

My poor, neglected pretty things.

Lately, I have been leaving the loft in this half-assed state of I Give Up and Please Don't Talk to Me, deciding I don't have energy to invest in my appearance AND in going out. On my last such venture I noticed myself being a cranky pants right from the start. I was pissy in the car with The Banker and I didn't really know why and

unwarranted pissyness is THE WORST kind of pissyness. 

I felt better at the theatre during the show where it was dark and nobody was looking at me. After, when there was talk of going for a drink, I knew there was a problem because I was back to being pissy and I didn't want to go. And that is super not like me because I love drinking.

There was a connection and I decided to test a theory. The next time The Banker and I went out it was to a dingy comedy bar. I didn't need to dress up for this crowd but I did. A little. I put on a simple knit dress, a chunky necklace and some gloss. What came next was

Cinderella level TRANSFORMATION.  

Suddenly I was sunshine, smiling at everyone and ready to party. Completely distracted from my weary and uncooperative body. I was being pleasant. Not only was I not acting like a beast person, I no longer felt like one. Could lipstick really do this?

Looking better makes me feel better and by extension you will feel better because as it turns out I am moody and kind of a jerk without accessories. The good news is that unlike MS there is a cure for my bitchiness and it is called mascara and a properly fitting bra.

So, am I vain? Obviously. I'm not proud of it. But if there is a connection between what I present to the world and how I feel about myself then who am I not to harness the awesome power of what's in my makeup bag?

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8.10.2015

How Come You Never Freak the F*ck Out? A love story.

I had a meltdown recently. One of those heaving, sobbing, gasping for air freak outs that comes along once (haha, I wish) or twice a year when things seem impossible and there is no end in sight. A popular theme for my bi-annual trip to Losing My Shitsville is my ever present fear of needing permanent wheels (or worse, but that's a good start). It's an anxiety taking up a lot of real estate in my imagination lately as I struggle to walk a straight line and remain upright for longer than a few minutes.  On this particular day I was ruminating over the fact that I want better for The Banker. I really mean it. He is an awesome guy. Tall, dark and handsome, he has a good job. He is funny and kind. He is still in his prime and he is a catch (Oh my god, why am I trying to sell him to you? He has a superfluous nipple, okay?).

So how did The Banker get such a raw deal? Don't get me wrong. I am a damn prize. But as time goes on I fear his love for me might turn him into my nurse and I DON'T WANT THAT more than I don't want to be alone. Through tears I tried to communicate this to him, and he is UNFLAPPABLE. First, he laughed at me and my silly concerns. This was annoying because I wasn't kidding. I'm serious. But this guy, he is so steady, so even. He never seems to get upset. It was only when I said through gross, snotty tears:

'What would it take for you to just freak the fuck out???'

and he held my face and made me look at him

'Losing you would make me freak the fuck out.' 

I took a deep breath. I wiped my nose on his shirt. I calmed down. I believed him and in that moment, I felt better.


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8.06.2015

10 Advantages of Being Legally Blind

Being blind must totally suck, right? WRONG.

While I describe myself as having low vision, the people in charge, who insist it is "illegal" for me to drive a car or fly a plane, have declared me Legally Blind. After a few rounds of MS induced optic neuritis, my eyesight went from spectacular to abysmal to semi-functional over the course of a few months. That is to say I went from being able to read your phone from across the room to ignorantly putting an empty fork in my mouth before settling into a frustratingly blurry but workable-ish level of visual acuity that I like to call, Bullshit. My peepers and I occasionally travel back to abysmal but mostly we live in semi-functional town. I have experienced almost nothing more terrifying than this back and forth flirtation with total vision loss. BUT I am exceedingly grateful for the eyesight that remains.

Because it could get worse. In fact, it might get worse.

MS disability is never static and the superstition prevails that if I am not thankful for what's left, that too will be yanked away. And so in an attempt to appease the optic nerve gods, I offer my most sincere gratitude with respect to my blind-ass status. Herewith 10 truly fantastic perks of being Legally Blind.

1. Free Stuff The CNIB is basically throwing stuff at me and my low vision homies. Discounts abound on movies, sports, theatre tix, museums, and even the train for my 20/20 'companion'. Guys. I get a FREE TTC pass. This is worth a million dollars and I have basically won the lottery. The normals look at me with envy when I whip out my annual transit pass like a baller.

90% of people helped by the awesome CNIB are partially sighted. In addition to free stuff they can help with great assistive technologies that are too boring to talk about here, but look them up.

2. Hero Status You're welcome because I am SAVING THE PLANET. I'm no hippie but not being able to drive means not owning a car which means my carbon footprint is smaller than yours. 

Bonus perk: Cash money. The Banker and I are a one car household and he assures me this means we are saving $$$ and he super knows this because he is a banker. Cha-ching.

3. Vanity You look AMAZING. And so do I. My slightly vague vision makes everyone look like they've been lightly airbrushed. I am a human instagram filter.

Bonus perk: License to try batshit crazy hair and makeup trends. Nobody can talk smack about you because what kind of asshole makes fun of a blind person?

4. Taxis I love a taxi. Fancy. And when I'm feeling extra fancy, Über Black. That fancy umlaut is for "Ooh, are you taking a taxi?" And it's what you're saying as you jealously walk across a cold, vacant parking lot in the dead of winter to your frozen Honda Civic. I'm already warm because my Über has heated seats. Fancy. There's probably a spider in your car because you parked it under a tree. 

5. Excuses We all suck at remembering faces but when I get called out on it you look like the jerk. And if I do something boneheaded like walk into a wall or drive my shopping cart over someone's foot prompting a sarcastic "What are you, blind?" Well, actually.

6. Bullshit Chores Taxes and other unpleasant fine print tasks are a thing of the past. And if I get audited? I didn't see shit. That's called PLAUSIBLE DENIABILITY.

7. Other People's Bullshit Chores I never, ever have to help you paint your apartment. I know we all say it will be fun. We'll have wine and pizza. But seriously. This may actually be the best and most legit benefit to losing your vision. I'm so sorry. I can't help. Blind.

8. Travel Travelling can for sure be more challenging for the LB but more often than not people will go out of their way to help. Airports have policies. No line-ups, bitches. Often your 20/20 friend can travel for free. FOR FREE.

9. Messing with People When people learn you are a blind-o they expect you will have some seriously heightened senses. Use your mad skills with confidence. Because you can smell lies and hear fear.

10. Drinking The obvious winner. I will never be the designated driver and nobody can say a word about it. From time to time a normal will attempt to gripe about this. Oh, you wish you could have five beers tonight too? Well, I wish I could see that giant letter E on the chart across the room. What's that you say? That's not an eye chart, that's a picture of your aunt? Well, I wouldn't know because I'm LEGALLY FUCKING BLIND. No worries, though because you are going to give me a safe drive home. So. We're cool.

Vision loss to any degree is gross and scary. I wouldn't wish it on my worst enemy (because she is such a dumb bitch that most of these perks would be totally lost on her). But it's not all about lurking in the shadows and bumping into shit. Sometimes it is about experiencing the world from a different perspective. And sometimes that perspective is dark and murky. But sometimes there is free stuff. So please pass the free wine. And then drive me home.

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