6.15.2017

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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5.01.2017

How to be a hypocrite: MS edition

The morning after a wild night out, I did what any proper party girl would, and sifted through the 4 million photos and selfies I’d taken the night before, deleting any that were blurry, where my hair looked weird, or where my lazy left eye made me look just a little too drunk. I am not a photo-realist. Then, I updated my social media with the most perfect pics of my glam and exciting life, all before brushing my teeth. 

The Banker and I had been to a gala event in the city with about 1900 of Toronto’s coolest and most cultured, art-gallery types. The requested attire was Steampunk, which I nailed, thanks to a crazy hat from my mom’s vintage collection. I knew I looked good and so did everyone else. I got loads of compliments from the beautiful people of the 6ix, of which, for that night, I was one.  

I know this for a fact because I was even paparazzi’d. I was delighted when a media photographer asked if he could shoot me, claiming the hat had caught his eye. This old thing? I immediately obliged, grabbing my cane and striking my sassiest pose after unceremoniously pushing Optimus Prime, my convertible rollator, off to the side and out of sight.

Wait, what?


Under a disco ball and the influence of more than one cucumber martini, for the sake of the photo, I pretended not to know, or need, my rollator. I didn’t think twice about my epic diss to Optimus until the next morning as I reflected back on the evening’s festivities. It went like this: happy memory, happy memory, uh-oh memory. You know, the one that shows up once you’ve sobered up and start scrolling through your mental inventory of the events of the previous night, scanning for shame? Who did you drunk text? Who did you wake up next to? Who did you offend?

Turns out I offended a robot, but that robot has a name and it’s Optimus Prime. We have a complicated relationship and maybe he’s kinda part of me and so maybe I kinda offended myself. 

WTF are you talking about? Are you still drunk?

Maybe.

Last year I wrote this piece in xojane about beauty and disability. I talked about how, as a society, we have trouble accepting that disability can be normal, and even beautiful, because we don’t ever see it represented that way in media and that has a powerful effect on what we collectively believe. Now, a year later, I had an opportunity to be represented in this very context, in a hip publication - to do the very thing I’ve been rallying for - and I totally fucking blew it.

Let’s be real. I’ve been shoving my rollator out of pictures since he arrived on my doorstep, and before that I was ditching my cane for pics that were private, never intended for a magazine or even a blog. In documenting my own life, I’m not trying to re-write history or deny my experience. We all struggle with how we look to the world. Selfies help us influence how we are perceived by others, but what about how we perceive ourselves?  

I don’t like what I imagine others will think when they see an image of me with a mobility aid. If a picture is worth 1000 words, it feels like almost all of them are negative when it comes to looking at disability. I’ve been brainwashed like everybody else into interpreting mobility aids as symbols of my own brokenness. 

But what if they are symbols of perseverance? Of resilience? Can’t I wear that proudly? 

Can’t I just get over myself?   

I want to contribute to the message that disability can be beautiful, I really do - for society’s sake but also for my own. I’d like to be someone who doesn’t have MS, who doesn’t need mobility aids. But I am. I know the best version of myself doesn’t hide this, but handles it with grace. I know this and yet, I can’t promise I won’t do it again. 


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4.12.2017

8 Things You Can Buy That Make MS Suck Less

Recently, a Multiple Sclerosis website asked me and some other MS bloggers, about the ‘one thing’ we can’t live without as world-class Trippers. Most said things like relationships, family, or - barf me to death - hope. Someone even said nature. Nature! Don’t get me wrong - I’m not slamming these bloggers (although I am raising an eyebrow at nature - where spiders live and winter comes from). No. These bloggers are better than me. These are obviously wholesome and decent people who have their priorities straight and their shit together. I, on the other hand, went with something from a store, because I'm shallow and materialistic and anyway, I can’t tell you to love your kids, but I can tell you what’s on sale at JCrew. 

As blogger after blessed blogger blah, blah, blah’d their devotion to raindrops on roses and whiskers on kittens, I was beginning to think I’d misunderstood the assignment. I feel like the website thought so too, because they put my contribution dead last. Probably in the hopes that people would have stopped reading by then. Thankfully, one kindred spirit in the comments section said ‘wine’ and I felt validated. 

But Mitch Sturgeon of Enjoying the Ride said something along the lines of never labeling anything you can’t live without because, as he had learned, MS is a thieving dick that will snatch away almost anything you love. 

I’m paraphrasing. 

Mitch listed his gratitude for his voice, which he uses to tell his wife he loves her (of course), after having lost all the function in his legs and much of the use of his arms and hands. 
Oh. 

He uses his voice to write his book and blog and to operate everything from lights and fans to the tv. Because we live in the future. I’m getting side-tracked here, but I was humbled into my own gratitude for that which remains, and for a moment my cold, black heart was warmed; the cynic in me, subdued.

When that strange feeling wore off, I started thinking about what valuable insights I could provide. Clearly, this crowd knows all about the importance of networks, of support systems, of dogs. Of all the things money can’t buy. Okay, technically money can buy a dog. And money definitely buys booze. But what else comes from a store and can make MS suck a little less?

Guys, none of this is sponsored. All opinions are my own. You hear that Netflix? You're getting yet another free ride.

Speedi-cath. That’s right. While the rest of the MS bloggers were talking about how much they love, and can’t live without, their wives, I pledged my allegiance to a tiny, plastic tube that helps me pee. And I stand by it. I love this product. This insanely expensive, thank-God-my-insurance-covers-it, desert-island-item number one, product. Because if you’re gonna drink, you’re gonna pee, and this little gem is the size of a mini-mascara. The kind you get for free when you buy too much makeup. (Also on my list - too much makeup.)

CleanseMore. While we’re talking toilets, let’s just get the scatological out of the way. It’s hard to talk about bladder problems, and even harder to talk about bowels, but if you’ve got MS, odds are yours is an asshole. I finally found a product that helps me keep things under control. The secret ingredient is magnesium hydroxide. And unicorn tears. Seriously, this stuff is magic. Remember, everyone’s different, so talk to your doctor. 

Align. This is the last poo-related promo. I promise. Align is a high quality, life altering probiotic. Please don’t ever go out of business, makers of Align.

My blender. The only appliance I use every damn day. Breakfast is always a nutritious, fibre-y smoothie because, if I miss it, I pay. I guess I wasn’t done talking about poo after all.  

A shoulder-strap bag. So my hands are free to hold my drink and/or break my fall when I trip on the curb. I got a beautiful one for my birthday from my Brooklyn Bestie, who now lives in Manhattan and I don’t even know what to call him now, but that’s another story. 

Optimus Prime. Shout out to blogger Jennifer Digmann who pledged her love to Grape Ape, her badass wheelchair. I baptized my own mobility aid Optimus Prime because, like a real life transformer he converts from a cool blue rollator to a transport chair. And he can destroy Decepticons.  

Heated Socks. Spring is here but that doesn’t mean I’m not still wrapped in a blanket, typing away through fingerless gloves. My brilliant, battery powered, heated socks are technically for skiers so you know they’re cool. 

Plans. To keep my mind from wandering into Worst Case Scenario day-mares, I try to always have things to look forward to in my calendar. Technically, this is more elusive than the promise I made that you can buy everything on this list. So I’ll qualify it by pointing out that what you can buy is an appropriate outfit for said plans. My xmas party is 8 months away and it’s already in the calendar. Save the date! 12.09.17.

So, what’s the best product you’ve found?


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4.04.2017

Let Me Pee In Your Powder Room: An Open Letter To Toronto Restaurant and Bar Owners

I love my city. Our city. I love our theatres, our comedy, our shopping. I love our big city lights and our big, bold sign. I love so much of what this town has to offer, but more than anything, I love our food game. From poutine to poke bowls, from dim-sum to designer donuts, Toronto is one of the most diverse cities in the world and our food culture reflects that. A boozy brunch with my girlfriends or a night on the town is part of what makes city life, well, city life. Going out has always been part of my lifestyle.

And, for a long time, I took it for granted. 

Until recently, it never occurred to me that something as simple as dinner and drinks might be on the endangered list; that the combination of multiple sclerosis and this city’s inaccessible spaces would make it anything but simple. MS and out-of-date design are threatening the world of going out that I love so much. Like most, I took reasonable access to public bathrooms for granted. 

Part of the charm of Toronto, and of many cities, is old-school architecture. But overwhelmingly, this means most bar and restaurant bathrooms are located in dungeons beneath steep, sketchy stairs. We’ve all agreed that a safe place to pee is a pretty basic human right; restaurants and bars are required to provide potties. I don’t want to bore you with like, the law, or anything, but these regulations only protect a portion of the population.

More than 10% of Canadians aged 15-64 have disabilities (Stats Canada 2012). It’s higher than 35% for persons over 65. That’s a freaking lot of people who have nowhere to pee in the mind-boggling majority of places. 

In Canada.

In 2017.


We don't say "I'm in the mood to pee".

We say "I HAVE to pee".

While I wait for society to catch up, I’ve been coming up with some work-arounds to keep me on the bar stool and out in the world. When I’m invited to the cool new gastro-pub in the latest hipster ‘hood, I call ahead or check the AccessNow app to determine whether or not the place has a main floor bathroom. It almost never does, which means it’s gonna be more of a kangaroo rat-kinda night.  

These bitches don't drink - ever. Look it up.

Kangaroo rat-nights mean skipping slushy pink cocktails and generous glasses of wine. Those are classic pee makers. Kangaroo rat-nights mean ordering saltines and hard liquor, because drinking whiskey by the ounce provides a pretty good buzz with none of the inconvenience of water. 

Whether we're talking about gender, race, or ability, bathroom access can be a yardstick of a society, reflective of who, and what, we value. Before MS struck, my fully-functioning-legs privilege let me live in ignorance of this problem. If we don’t speak up, businesses might wrongly assume that accessibility isn’t an unmet need. 

Look, I get it. First the gluten people, and now this. It can be tough to make everyone happy in the restaurant biz. But aside from it being the right thing to do, business owners have the opportunity to be leaders in the next big social justice movement. Nobody really likes stairs anyway. Even healthy people groan when they realize they have to walk down the stairs to pee, tipsy and in stilettos. 

Still not convinced? Consider this:

Branding: Accessible businesses have bragging rights. Being ethical and inclusive will earn you the respect and repeat business of customers of all abilities. 

Reputation: Toronto is respected for its diversity and inclusiveness, as is Canada. As a business owner you help create and maintain that reputation.

Money: Accessibility not only affects disabled persons, transgendered people, and parents of small children - it affects anyone who wants to hang out with them. Accessible businesses reach more people. More people means more money. Don’t you want more money?

The Law: Many upgrades can be done inexpensively, and will pay off in the long run. The deadline for compliance with the Accessibility for Ontarians with Disabilities Act is 2025, so be forward thinking and do it now, while it’s still cool, before that nagging B, the government, gets all up in your face.

Here's an adorable picture of me.
Don't you want to serve me a drink, and let me pee in your powder room?

There are accessibility barriers beyond bathroom access that haven't been dealt with here. But bathroom rights are a hot topic right now, so while we're thinking about it, debating it and legislating it, because we know how effing essential it is, we must remember to consider everyone. Disability is not a new phenomenon, and sadly, nor is over-looking this population. In an era of unprecedented social awareness, even unintentional obstacles that exclude persons with disabilities from reasonable participation, can feel like discrimination.

I know a well-curated cheese plate and artisanal beer-flight aren't going to fix my MS. But being able to participate in the social world around me is what makes life worth living. So, let’s make a deal - you provide inclusive facilities, and everyone I know will social media the hell out of your business. It’s time to invite everyone to the table and to la toilette. 

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2.20.2017

Treating Secondary Progressive Multiple Sclerosis - Ketones, Biotin and Netflix...Oh, My

On paper, I’ve got relapsing remitting MS. Whatever that means. After a series of unsuccessful treatments, it's looking more and more like secondary progressive MS is starting to take over. Whatever that means. The distinction between the two is up for debate, and that's for people way smarter than me to sort out. I do know that one of the key practical differences between the two classifications is that there are a tonne of approved treatments for RRMS and not much more than hope on the horizon for SPMS. 

After blowing through 5 of the most aggressive disease modifying drugs available, I’ve run out of conventional medical options. But I can’t just sit back and do nothing, so here are the unconventional things I'm doing to deal with my (probably) SPMS as I wait for science to catch up. 

WARNING: this is not advice. This is a blog. Talk to your doctors. You don’t know me (and even if you do), I’m just some rando with a computer. Do your homework. 

Ketones

I love a trendy diet. Avocado toast and kimchi are so last year. Charcoal is the new bone broth and #buttercoffee is my latest obsesh. But regardless of whatever Gwyneth or Dr Oz might be slinging this week, I’ve been using diet and nutrition in earnest to influence my MS and my overall health for years. So, when I first learned about research into the ketogenic diet as treatment for MS and other neurological conditions, my interest was piqued. 

What it is: Some science-types are examining the brain-health potential and neuro-protective capacity of ketones. The brain uses ketones instead of glucose as an energy source when the body is low on carbs. Fun fact: Ketogenic diets have long been used in the treatment of epilepsy with great success. 

How it works: Kind of Atkins’y in that you can achieve ketosis with a high-fat/ample protein/low-carb régime. That doesn’t exactly work for me, because I don’t want to wrap my butter in bacon, and I like bread. So instead, 5 days a week I eat bread (and fruit, veg, fish, meat, popcorn and whatever the hell else I want), and 2 days a week I fast by dialing my caloric intake way back. Then I pee on a stick, and it tells me I’m making ketones, which are hopefully traveling up to my brain and fixing it.

Uhm, is that safe? Relax, mom. My doctors are following me. And I’m maintaining a healthy weight by breaking my weekly fasts with handfuls of triple crème brie. (Note: if you are underweight or have a history of eating disorders, this is not for you)

So…? I feel great on fasting days when I typically have a kefir smoothie, salad and homemade soup, lots of water and even coffee. It can feel like a bit of a detox.

Supplements

Speaking of pee, mine is super fancy. That’s because it’s loaded with supplements. I started seeing a naturopath who recommended the usual mega-doses of vitamin D, but also looked at my blood-work and saw areas that could use some cleaning up that might have nothing to do with MS. I'm looking for things to encourage myelin repair and nerve protection but I'm also interested in prevention because, let's face it, I've been effing with my immune system for years and, turns out, you can get more than one disease at a time. So, iron, B12, EGCG, some weird (but not magic) mushrooms, EFA’s, milk thistle and turmeric are all part of my daily routine.   

Biotin

Biotin is a supplement (B7) that gets its own category because it’s really expensive and you need a prescription and a compounding pharmacy to get it in the mega-doses that have shown encouraging results in improved disability scores for persons with progressive illness. Bonus: I don’t know what my myelin looks like, but I’ve been taking it for 10 weeks and my nails are hard and my hair is shiny. Like a pony. 

Food 

I get full on a mostly whole foods diet but I also believe in chips the pleasure of food and the importance of sharing meals with loved ones, so there isn’t really anything I would forbid myself to eat (except diet soda because, gross). I eat real, unprocessed food as much as possible, and mindful eating allows me to budget calories for wine. Because you’ve gotta detox to retox.

Move

Physio is hard. And let’s face it, hella boring. I’m not running on a trail, wind in my hair, listening to Beyoncé jams. I’m doing tiny, tedious ankle raises, and they are kicking my ass. It can be hard to stay motivated, so I treat physio like it’s my job. Connecting with a therapist who pushes me, helps. When I went from regular aerobic workouts to struggling up a few stairs, I flipped the bird to cardio. But my bossy therapist pushed me to keep trying. Reluctantly, I started with just 2 minutes a day on the elliptical. Now I’m up to 10. I regularly feel like an obvious tool sliding into the gym for a scant 10 minutes, but that’s 5 times what I was doing a month ago. And, when I realize that’s 10 more than a lot of able-bodied normals have done all year, I feel smug and self-satisfied. Research says our brains need this. The cardio, that is. Research is still out on the smugness.

Imagine

Elite athletes have been improving their performance with mental practice for years, and the idea that the same principles could be used to train MS brains to do things like walk faster, makes sense. Research thinks so too. Check it out. Quality mental practice through focused visualization can have the effect of activating areas of the brain that would be engaged if the task were actually being completed. My physiotherapist and I developed a script to coach me through day-dreams of walking quickly and correctly. Sounds boring, right? It is! But that seems to be the only downside, and a way better use of my imagination than freaking out about the impending zombie apocalypse. 

Think

I roll my eyes when people with uncomplicated bodies tell me to think positive as if that’s all I need. I do believe in the power of attitude, but I don’t want to hear it from someone else, and you don’t want to hear it from me. I’ll just say this: it’s not always possible, but when I am able to love what I have, that is when I’m happiest. 

Do (and Don’t)

Self-care for me, incorporates all of the wellness initiatives above, but also includes meaningful work like writing this blog, investing in relationships, filling my days with interesting projects and ample downtime. I treat Netflix and snuggles with the dog like it’s a written prescription.

Rx Netflix and naps. Repeat as necessary.

So, does any of this stuff work? I dunno. know. Stay tuned. In the mean time, what do you do when drugs don’t cut it?

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1.10.2017

Dear Meryl Streep

At the Golden Globes on Sunday night, Meryl Streep called out Trump for publicly mocking a disabled reporter and then high five’d Hollywood for its inclusiveness, identifying her community as “crawling with outsiders and foreigners”. While I was excited to see a major star use such a huge platform to defend the dignity of Mr. Kovaleski and to speak out against the unjust treatment of persons with disabilities, Hollywood is not yet deserving of a pat on the back for total inclusion, especially as it relates to disability representation.

c Thomas Wolf www.foto-tw.de CC BY-SA 3.0 DE

Across multiple media, including television and film, disability is still grossly underrepresented, misrepresented or just plain ignored. In her speech, Streep said “An actor’s only job is to enter the lives of people who are different from us, and let you feel what that feels like”. But in the world of entertainment, disability stories are little more than stereotypes of victims and burdens, heroes or freaks; lazy tropes that are used to make us feel specific emotions. These careless characterizations are not just hurtful, they're dangerous. They inform how we see disabled people in real life and lead us to believe they are low status individuals. 

The real stories of disability are still not being told.

The arts are by nature forward thinking and innovative. Media is one of the most effective vehicles to illicit change in hearts and minds. Hollywood has a real opportunity to influence and normalize how we see disability just as it has for other marginalized groups.

So, thank you Ms. Streep, for shedding a massive light on this issue. You're amazing and I love you, but there's still work to be done. I hope this encourages more conversation about the accurate and authentic inclusion and representation of disability across all media.

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1.01.2017

New Year, New You? 2017 Resolutions (sort of)

Dedicated readers may remember this (slightly modified) address. We're all throwing shade at 2016 and the need for optimism feels even more relevant as we dip a nervous toe into 2017. Or maybe I’m too hungover to come up with anything new. 

It's the first day of a shiny new year. The day when all the mistakes of the previous year are behind us and anything seems possible. By now, at least a month of partying has been put to bed, its memories tucked safely away on Instagram. My liver and credit card are holding hands and whispering “It’s over. We’re safe now”. The fun is over and as we face that icy, unforgiving bitch, January, it's hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of 2016, while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year's. It’s up to you. 


Or not. Whatever.
For others, a new year means waking up January 1st in last night’s makeup and one shoe, rubbing mascara from your eyes while looking in the mirror and making RESOLUTIONS. Because a new year means a new you. One where you can get fit, find love, take that improv class, quit day drinking, stop using LOL and start being nice to the cat. I don't know what you're into. The point is: 

Anything is Possible

Many start the year with big plans only to find themselves failing by February. So, why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams, saying them out loud, is an important step to realizing them. Even if we never keep our pledges, the act of making them means we take stock, examine what we like and maybe experience a few moments of gratitude, and then reject what it is we don’t like. We get to know ourselves better for having named our convictions; for declaring just who it is we want to be.

In chronic progressive illness the measuring of time is tricky business. By definition we're supposed to, well, progress. Each calendar year is marked by diagnoses, tests, treatment régimes and abilities gradually lost. Ticking time can be a scary contemplation. Resolving to regrow myelin is more futile than resolving to lose those last five pounds. There are certain things over which we simply have no control. 

So this year I’m choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh, and commit to spending more time with them. I will pay attention to what doesn’t make me feel good and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear, because dwelling on the worst case scenario is a waste of my imagination. 

It’s 2017


Embrace unrelenting optimism


Happy New Year, Trippers



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