Life hacks

How To Make The Best Of The Holidays In Covid Times

A woman with MS sits on a couch in front of a Christmas tree, determined to safely celebrate the holidays in the time of Covid.
MS and Covid are the ultimate party crashers. Here’s how to outsmart them both.

The holidays, Covid, and MS

Nobody would blame you for wanting to sit out the holidays this year. I thought about it myself; sitting is kinda my thing. But those of us with MS already know we can’t press pause on life while we wait for things to get better. At least for now, Covid is real life.

MS complicates everything, and regular readers will remember this holiday survival guide from the Before Times, with tips on pacing (pre-nap), entertaining (cut corners), and self-care (drink through it). With Covid lurking around every corner, it will require even more creativity to reimagine the holidays in 2020. The good news is, if you’ve had MS for more than a minute, chances are you already know how to pivot. I’m signing up to celebrate a Covid Christmas because having things to look forward to, is one of the pillars of happiness.

Looking forward to this champagne while I wait for Santa to bring me the extra presents I deserve.

Will Covid make the holidays suck?

Even a party-girl like me can recognize there are some perks to a Covid Christmas. I mean, you don’t have to thoroughly clean the bathroom, or put on a bra, or eat your aunt’s weird Jell-O with the carrots in it. You don’t have to suffer through the 12 Days of Christmas at your niece’s school pageant, or make small talk with your drunk uncle or lowkey racist grandmother. You don’t even have to go to church. Buffets are cancelled forever, and we finally have the collective realization that putting your hand in a shared bowl of chips is like putting your hand in a toilet and then licking your fingers.  

A blonde woman in an angel costume is kneeling next to a real donkey in a church Christmas pageant.
Just kidding guys–church is where you can drink wine in the morning, wear a halo, and hang out with farm animals.

Of course there are some legitimate things we will miss–seeing who polishes off too many candy-cane martinis and hooks up at the office Christmas party, or the look on my sister’s face when I gift her kid with finger-paints and a megaphone, par exemple. The good news is that lockdown basically encourages you to add Irish cream to your coffee and eat pie for breakfast while bingeing Christmas movies in your flannel pj’s. And I am so here for it.

When we are missing our families and friends this year, let us remember that the most loving thing we can do is to stay apart. Let’s keep each other safe. And in the meantime, figure out new ways to party, 2020 style. 

Maintain the traditions you can

Canadian Thanksgiving was in October (or as we call it, Regular Thanksgiving), and it was just The Banker and me. Did I still get a 15lb turkey for two people? You bet I did. Did I have it catered, so I wouldn’t even have to cook it? YOLO, bitches. It was ridiculous, and indulgent; it took up all the space in our tiny freezer. And it was worth it. While you may not be able to keep all of your traditions, make the most of the ones you can maintain.  

A Thanksgiving holiday display of gourds and turkey-shaped tea lights.
It’s time to bust out all your beautiful things.

Do it for the ’gram

If you love putting on sequins and a red lip or blinging out your décor for the holidays, but you’re feeling like nobody will appreciate it, allow me to introduce you to my friend, The Internet. With so much bad news out there I’m looking forward to scrolling through Insta and seeing your festive makeup lewk, your nutcracker collection, your fancy champagne flutes, and every sugary treat you make. Don’t tell The Banker, but I just ordered another 600 lights for our tree because this is no time for sitting in the dark.

A woman with MS stands in a white coat and watches while a Christmas tree is being bound.
more is more

Eat

Food and smell are associated with powerful memories. If you can’t be with the people you love, try to make the food you associate with them. Or publicly guilt your mom into making the fruitcake (“I have brain damage” usually works), and arrange for a curbside pickup. Is there a coveted family dish you’ve never made because your G always makes it? This is the year to have her teach it to you over Facetime (while you teach her Facetime). 

A Christmas tree in the background with a plate of treats including fruitcake in the foreground. The words Like a hug from my mom are written across the photo.
tastes like memories

Get gifting

If gifts are a part of your holiday tradition, get shopping. We’ve all been depending on Amazon lately, but think about ordering locally and supporting independent businesses who need us now more than ever. Watch for the annual TOA holiday gift guide coming soon, and in the meantime, check out past guides here and here. If scooping the best deals is your thing, take advantage of sites like Wikibuy where you can compare prices on certain products and brands.

Go for a drive

Put your hot chocolate in your travel mug and crank a holiday playlist while you cruise the bougiest neighborhood with the best lights game in town. No mask required. 

Start a new tradition

Nobody wants to sit through one more Zoom call where we all go around the square and moan about how much Covid sucks, while secretly feeling grateful the session will time out after 40 minutes. I recently discovered jackboxgames.com, a site that sets you up to play distanced games on your next video call. Quiplash is one of their most popular games (it’s kind of like Balderdash), and it provides so many laughs that I would consider playing this even if the world weren’t covered in plague. 

Cut corners

There’s good, and there’s good enough. Even without Covid, the holidays are exhausting, especially for those of us with MS. In the Before Times, if people were coming over, cutting corners meant shoving shit in a closet. Now you only need to keep one small section of your home camera-ready clean. If that’s still too much, you can just change the background on your next Zoom party. 

Empty wine glasses sit on a counter next to a toy Grinch.
Think of all the dishes you won’t have to wash replace, because you didn’t drop them.

Every year I have romantic notions of sipping cider and listening to jazzy holiday tunes while spending an evening lovingly wrapping gifts. The reality is unnecessary back pain, paper cuts, and running out of boxes and tape. Wrapping always takes ten times longer than I expect, and by midnight I’m either crying that it’s still not done, or too drunk to care. This year I’m having most of my gifts sent directly to the recipients meaning I hardly have to wrap anything. Let the choir sing.

Outdoor holiday carollers.
From the Before Times. I’m the one in the giant white hat. Naturally.

Reach out 

When you feel the shittiest, do something good for someone else. Give to charity, pick up the phone and call a friend who’s struggling, drop off cookies for your crankiest neighbour. Even if we have very little, giving what we can is a healthy exercise in self-care. When we are generous, we tell ourselves that we have enough. The holidays tend to make loneliness lonelier and this year will prove especially challenging for many. If you yourself are lonely, please reach out.

Saying no to something is saying yes to something else 

There are a lot of things we’ve been forced to say no to this year. FOMO is at an all time high, but if you have MS, you still may find yourself unable to keep up during the holidays. If saying no to whatever it is that’s not worth your precious energy means saying yes to a nap, or a glass of wine, or some time alone, remember, you are honouring your body and saying yes to you.

Neither MS nor Covid can stop the holidays

When I’m feeling down about a Covid Christmas, I remind myself that we’ve all survived disappointing holidays. There’s almost always some good and some not-so-good every holiday season, and if this season’s celebration isn’t ideal, we get to do it all again next year. December is a popular time for me to experience burnout and the fucking flu, so I’m going to embrace a cozy germ-free holiday this year, with lots of Netflix, a tree, a puppy at my feet, and The Banker by my side. More than ever, 2020 feels like a time to think about, and feel grateful for what I’ve got. 

Happy Holidays, Trippers! How will you celebrate this year?

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13 Survival Tips When You Hate Getting An MRI

A pretty blue brain on a pink background. If you hate getting an MRI this computerized brain is a soothing image.
If you have MS, there’s a good chance you’ll have at least one MRI a year, so it makes sense to figure out how to hack your annual Picture Day.

13 Survival Tips When You Hate Getting An MRI

An MRI is an imaging technique that uses magnets to take pictures of your brain while it’s still inside your skull. The hocus pocus happens in a giant scanner that’s part half-open coffin, part world’s largest photocopier; and, you’d think we would have figured out how to make them less scary or loud by now, but science is busy working on other shit, like this knife made out of poop. The images produced by an MRI can be used to help diagnose and monitor changes or progression in MS.

Ardra in her grade 8 school picture. She has an aggressive perm and hasn't yet grown into her buck teeth. These are the awkward years.
Nailing Picture Day since 1991

When I went for my first MRI, 19 years ago, I had zero chill about an experience that felt like being trapped in a screaming tube while it tried to Morse Code my brain damage. Now I’ve had at least 25 MRI’s (my most recent one was last week), and I almost look forward to them. I mean, the world is covered in plague, so the bar has been lowered on what qualifies as an exciting outing. I got to leave my apartment, and I got to lie down for an hour, so, that feels like a win. (Note to the MRI people: a lollipop would have been nice)

Getting an MRI isn’t painful or invasive, but it can be stressful.

Here’s how to get ready for the most detailed selfie of your life.

Ardra is wearing a Covid mask, a hospital gown and ID bracelet. She is standing in the MRI change room. She has added graphics of an MRI machine and brain with legs to the image.
If you didn’t take a selfie did it even happen?

Dress Comfortably

Rule number one of MRI-getting is you must be free of all metal and electronic devices, because according to urban legends, that could make you die. Check out this video to be scared off of earrings forever.

Holy shit, is this real? 

Who am I, Bill Nye? All I know is that I once had to have an emergency MRI while I was wearing microlink hair extensions. The Banker had to run to Canadian Tire to buy pliers (we’re not really toolbox people), so he could urgently remove six million metal tubes from my head. FML. Now I wear tape-ins.

And speaking of urban legends, fellow Tripper Kathy told me her last MRI had to be stopped because her anti-frizz hair product had some kind of metal particles in it. She had to wash her hair in the hospital sink (ew) before they could proceed.

A close up picture of a hair product called Frizz Ease.
silent killer

But back to wardrobe…

Every centre has a different policy, and some are cool with letting you wear track pants and a sports bra; but, my current facility has trust issues and they make me strip down and gown up. To hack this, I wore a simple knit dress (no buttons, no zippers) to my recent scan because getting dressed and undressed and then dressed again is for people who have the kind of energy to put their legs through leg holes more than once a day. And now I need a nap just thinking about it.

Wear the right mask

Despite being asked many, many times to confirm the absence of piercings, and past surgeries, and metal on my person, I was not asked about my Covid mask which in fact has a tiny metal bendy thing over the nose. Good thing I watched that cautionary video.

A selfie of Ardra wearing a ruffled Covid mask. She is in her library.
Fashion Safety First

Check your mobility aid

Is carbon fibre magnetic? Nobody knows. But if you use a mobility aid, you won’t be able to bring it into the room with the scanner, so consider bringing your wooden cane with your rollator or wheelchair if you can walk a few steps. Otherwise, you will be transferred in one of the MRI-safe chairs provided, or like me, you will be offered the sweaty arm of a helpful, but—I can’t stress this enoughsweaty technician.

Ardra stands outside, next to some graffiti. She has a white rollator and her dog is looking at her adoringly. She's pretty sure that you can't even bring a service dog to your MRI no matter how much you hate MRIs.
Leave your rollator in the hall and your dog at home.

Play the MS card

I don’t know what it’s like where you live; but in Canada, we’re short on  MRI scanners, which means we run the ones we do have 24/7. If you get an appointment at 3 a.m. on a Tuesday, try to sweet-talk whoever’s booking you, because 3 a.m. is a garbage time for everyone except vampires and werewolves and you don’t want to run into either of those assholes. If you’ve got MS you’ve got enough problems.

Eat and drink before getting an MRI

Your doctor might want you to have contrast dye with your MRI to help distinguish any new or worsening damage. When this is indicated, you will be injected with something called gadolinium at the half-way point of your scan.

Hold up. I thought you said painless and non-invasive? 

The point is, you should eat a little something and drink some H20 before your scan, because you want to have available veins. My last scan was at 6 a.m. (barf), so I traded my breakfast smoothie for a granola bar, and my coffee for 16 chocolate covered espresso beans, because I am never in the mood for a caffeine detox.

But don’t drink too much

Your scan will take about an hour, and you don’t want to have to pee. Always go right before your scan, but don’t sweat it too much. I mean, they give you a panic button, and I assume that’s what it’s for.

And then hydrate LF

If you were limiting fluids to avoid peeing your pants and especially if you’ve had gadolinium, it’s super important to drink lots of water after your MRI. Your kidneys will thank you.

Accessorize

You will be given headphones and off-brand earplugs. I like to bring my own earplugs because I’m fancy and high-maintenance they actually work. I also like to bring a sleep mask, so if I accidentally open my eyes I won’t be reminded I’m trapped in a machine with a Hannibal Lecter-style cage around my face.

Ardra's MRI. It includes the eyes and they are pointed upwards. It's funny which makes her hate MRIs less.
Literally always rolling my eyes.

Choose your music wisely

I feel like the option to listen to your favourite music accompanied by the sound of a jackhammer just makes you hate your favourite music.

Stay in touch

Your technician will be able to communicate with you throughout your appointment. In my experience, they don’t enjoy my jokes, and they really don’t enjoy talking about their feelings. But, if you want them to keep you updated about how much longer you’re gonna be stuck in the scanner, they love that shit.

Medicate

If you’re super anxious, you can ask your doctor for valium or something similar ahead of time. Keep in mind that you won’t be allowed to go home alone, but do what you need to do to get by.

Check your results

Lots of places allow you to check your results online. But be aware that disappointing results can heighten anxiety. Keep in mind that the number of lesions you might have doesn’t necessarily correspond to symptoms or disability. If you suspect your news might be hard to hear, consider having a trusted loved one with you when you log on, or wait for your neurologist to break it down for you, when they can answer all of your burning questions.

Reward yourself

MS is hard. MS is a job. Part of the stress of getting an MRI is that it’s a reminder that you have a crappy disease. I like to treat myself like a four year old and give myself prizes on patient days. Little rewards for having to do so many unpleasant things: a latte, a cookie, a new car. I don’t know what your budget is. 

Getting an MRI is a routine part of having MS, and if it sounds like I’m complaining, it’s because I am. And if it sounds like I’m exaggerating, it’s also because I am. I promise you MRIs are safe, and even if you feel trapped, you really aren’t. The techs know what they’re doing and will prop you up with pillows and cover you in flannel blankies to make you as comfortable as possible. MRIs are an important diagnostic tool, and even I can admit they’re better than the hot bath test we had before they were invented. Plus, it’s pretty cool to see where my MS lives. If you’re not sold on how even damaged brains can be beautiful, check out Lindsey Holcomb’s work. I’ve been meaning to have her do my MRI portrait since I first heard of her; and, now that I have a fresh MRI I’m hoping she’s available.

Ardra's signature and Tripping On Air logo which is a pink drawing of a woman in heels with a ponytail who is falling backwards. She's holding a champagne flute which she doesn't drop because, priorites.

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How To Share Your Story As An MS Advocate

A version of this post first appeared in Aby: the app for people living with MS. All opinions are my own.

How To Share Your Story As An MS Advocate

There’s never been a better time to become an MS advocate, influencer, blogger, vlogger, Tiktoker, ’grammer, podcaster, whatevs. Until relatively recently, the main resources for people looking to learn about an MS diagnosis were medical professionals and nationally recognized non-profit organizations. But patients are experts in a way that doctors, drug companies, and MS Societies could never be, and first-hand experience is an essential part of understanding any chronic illness. Social media has become a powerful platform where advocates can help shape an uncensored and nuanced picture of what it really means to live with MS.

MS advocacy and story-telling can:

  • Help family, friends, and coworkers better understand the impact of MS
  • influence donations and social change
  • alleviate feelings of loneliness by facilitating connections with others who ‘get it’
  • encourage information sharing that may be helpful for managing and understanding MS

When you’re living in a body that feels like it’s calling all the shots, it can be empowering to take ownership of your story. If you’re ready to share your unique expertise, here are some of the tools in my MS influencer kit:

Be niche

I may write about diet, fashion, and travel, but they’re all through the lens of MS. I won’t post random pictures of my dog being cute. Everyone’s dog is cute. I will post about the curious reaction I used to get when people saw a disabled woman taking her three-legged dog for a hop. I make my post about MS. If you’ve decided to become an advocate for your chronic illness, you’ve already identified your niche. But, is there a niche within your niche? Perhaps it’s moms with MS, or the LGBTQ community and MS, or paediatric MS. If you can dream it, there’s an audience for it.

We both need a bath.

Find your voice

Develop a strong point of view and lean into it. Figure out what’s unique about you and your story. Be truthful without writing what you think people want to hear–you can’t write for everyone. Authentic stories are better than sugar-coated ones.

Create quality content

Creating excellent content is the most important element to being a successful MS advocate. Be knowledgeable about your subject matter. Fact-check everything you publish, and be careful not to spread false information. Pay attention to grammar and spelling. Credibility is key.

Establish good habits

Readers make better writers. And so does practice. Get in the habit of writing every day, even if it’s just a few lines in a journal. A daily self-analysis can help you become a boss at articulating your life with MS.

Keeping a diary is a great way of documenting your hair transformations while getting your 10 thousand writer-hours in.

Set boundaries

You own your story and it’s yours to tell. The more personal and vulnerable you can be, the more your content will resonate. However, only share what you’re comfortable with. When in doubt, ask yourself, “Would I be okay if this were published in the New York Times?” If you’re not cool with your worst enemy reading about your bladder problem, don’t write about it.

Keeping up with social media, posting, and interacting can be exhausting. Remember that you have a chronic illness and set boundaries. Late night screen time can disrupt sleep and your ability to wind down.

Build your audience

Post regularly. Use hashtags. Be active on more than one platform, and vary your content as much as possible. Look for opportunities to guest blog. Contact MS organizations who are always looking for patient stories. Interview other MS advocates. If they share your work it will drive a broader audience to your channels.

Don’t post and ghost

Engage with the MS community. Comment thoughtfully and regularly on similar blogs and content. Follow back and make an effort to respond to everyone who comments or messages you.

Embrace the competition

There’s only one you. The internet is a vast and infinitely expanding space, and there’s plenty of room for all good story-tellers. Curating and sharing your community’s quality content positions you as an expert in your niche, so share generously. Remember, everyone’s MS is different. You’re not here to speak for MS. You’re here to speak for your MS.

If you have MS, you’ve got a unique story to tell and I want to hear about it! Please share your advocacy in the comments.

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10 Reasons Why Laughing At MS Is The Best

This post originally appeared on Damsel in a Dress.

I’m Ardra and I write Tripping on Air, a lippy blog about my life with multiple sclerosis (MS). People tell me it’s funny and I believe them because I’m an egomaniac. Lisa asked me to write a guest post about why I write with humour, about something so effing awful.

Lisa has EDS, and you should follow her on Insta.

Lisa is lazy or she just had surgery or whatever, because she already knows the answer – she writes with humour too and is funny af. I did not have surgery, but I am also lazy, so lucky for me the answer to her question is easy. Mostly because I stole it from the late, and brilliant, personal-calamity writer, Nora Ephron.

“When you slip on a banana peel, people laugh at you. But when you tell people you slipped on a banana peel, it’s your laugh.”

Replace “slip on a banana peel” with “pee your pants at the mall” and this pretty much sums up why I write about my life. I control the version. You can’t whisper behind my back about the tragedy that is my life because I’ve decided it’s a rom-com instead. Before I started blogging it felt like everyone had a different version of what it’s like to be me. But I own the rights to my stories, and I want to tell them in my own words. It just so happens that a lot of those words are swear words. I didn’t set out to write a ‘funny’ blog. Humour is just how I tell stories.

Laughter is the best medicine

When it comes to comedy, science is on my side. Turns out, using jokes to deal with terrible shit is good for you. And while your actual medicine is probably the best medicine, if you have a chronic illness like MS, you already know your medicine is kind of bullshit or you wouldn’t still be sick. The good news is laughter does have some serious health benefits. Some smarty-pants people at Johns Hopkins say laughter can help with things like sleep and memory; it can improve your immune system, relieve pain, curb stress, and help with depression and anxiety. If laughter were an actual drug, we’d be buying it in a back alley from a shady dude named Cheeseburger.

Laughing burns calories

This is near the top of my list because, as I mentioned, lazy. According to science, laughter stimulates organs like your heart and lungs. It can increase circulation and muscle relaxation. It’s like exercise without having to get sweaty. Or put on a bra. Sign me up.

Laughing helps us listen

Listening to anyone talk about illness is probably not the way you wanna spend your Friday night. Or any night. It can be sobering. It can be depressing. It can be boring. Laughter is like a shot of vodka  spoonful of sugar to make the difficult information go down. If you can make the darkest message funny, it’s less of a buzz-kill and easier to hear.

Laughing comforts

Why should I care how you feel when I’m the one with the terrible fucking disease? Well, if you’re sad I’m sad, and if you’re scared I’m scared. Humour is a way to comfort others and let them know I’m okay (and not terrifying to be around). Sometimes it’s in convincing others that I convince myself. Being funny is kind of a survival strategy.

Laughing releases tension

Humour can diffuse an awkward situation. It provides a tension release that says “Oh, thank God. I don’t have to be sad anymore, because the sick girl said I could laugh”. For the one cracking the jokes, comedy can help reinterpret a situation in a way that’s more bearable.

Laughter can manipulate you into feeling something other than pity, grief, superiority, gratitude that your life isn’t mine, or whatever other uncomfortable feeling you’re experiencing

Disease, illness, disability, whatever – it’s all normal. But we don’t treat it that way. People get weird around disease. Be weird on your own time, because when you feel those things around me, I feel them reflected back. And it sucks. Humour can help normalize things, even humanize things, remind you I’m still the same. What’s more, comedy can break taboos, and challenge society’s messed-up ideas about who and what people with illness are.

My improv class circra 2015. Love these dorks.

Laughter is an expression of resilience, it’s powerful

You could have been executed for telling a joke against the Nazi regime, that’s how much bad guys are threatened by humour. Satire and jokes have always been a form of resistance. Even if MS is technically in charge, making fun of the enemy is a weapon that can make me feel superior, give me a sense of ownership over a situation that was imposed upon me. MS is the evil dictator that needs to be taken down a peg. I’m better than you, MS. You can take my legs but you can’t break me. I will not be compelled to suffer. You’re not the boss of me. And so on.

Laughter is contagious – like the flu, but more popular

Laughter forces us to live in the present, and grounds us in a positive moment without having to, like, actually meditate. At its most powerful, laughter is a shared experience that strengthens connections. We like people who make us giggle, and who guffaw at our jokes. It’s like saying “I get you. I know where you’re coming from.” It’s validating.

My first time doing stand-up. But like, sit-down.

When laughter is bad

Like all good drugs, even laughter comes with scary side effects like headaches and hiccups. Additionally, laughter can actually make you pee your pants, and in rare cases – I kid you not – laughter can provoke a fatal reaction. You could literally die laughing. Ever been tickled? You could suffer an abdominal hernia, or inhale foreign bodies and choke to death. And that’s not funny. Or is it?

Go forth and laugh at your problems

I can’t tell you to go be funny and all your problems will go away. To be honest, I don’t actually think my disease is funny at all. And not all of my blog posts are funny either; in fact, I’m sure there are some who think none of them are. (They’re wrong.) I spend the overwhelming majority of my time feeling frustrated, sad, or pissed about what’s happening to my body. I scream and cry as much as the next person. It’s exhausting. Finding the literally sick joke in a serious situation is a way to escape those negative feelings. It’s cathartic, it’s healing. If you haven’t already, you should try it.

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How To Pick Your Word Of The Year (when you have MS)

How to pick your 2020 word of the year when you have MS.

New Year’s haters, I see you. You know this meaningless milestone is too expensive, too overrated, too loud, too shiny, too tipsy. I’m not gonna fight you on this, but I happen to love New Year’s (check the receipts here, here, and here). And not just because I’m also too loud, too shiny, too tipsy. I love New Year’s because there’s something magical about the energy of a room full of people counting in unison, under the champagne-fuelled suspension of disbelief that allows us to imagine, if only for 10 seconds a year, that life could change for the better at the stroke of midnight.

This is how we do it.

When you have a chronic progressive illness like MS, it’s hard not to think about the future without fear and foreboding. How drunk do you have to be to believe the best is yet to come when you have a disease that, by definition, is supposed to get worse? 

Exactly this drunk

While I have mixed feelings about the merits of hope, I’m sliding into the decade feeling like maybe it’s time to press pause on my realism, and wondering if it’s possible to bring some of the intoxicating NYE vibe into my year without actually having to be intoxicated all the time. 

Enter word of the year

The good news is, resolutions are canceled. It’s 2020, and the new trend is to choose a word of the year: one word; a bespoke mantra to help set your intentions for the future. 

Par exemple, if I wanted more exercise in 2020, instead of making a resolution to hit the gym 5 days a week, I might make my word of the year “move”. If I wanted to get ahead at work, or finally get rid of those pesky dragons, I might choose “slay”. 

A word of the year is more chill than a bossy resolution. Your word doesn’t have to be about climbing mountains or corporate ladders either. You don’t even have to pick a verb. Your word could be “peace”. Or “pizzazz”. Or “dry-shampoo”. You could pick two. You don’t have to pay for them.

How to pick your word of the year

Think about what you want out of the months to come. It’s easy to say “fuck 2019; die already. But what is it about last year that you want to leave behind? One of the biggest challenges for anyone with MS is learning how to adapt and coexist with your disease. Picking a word likebreathe won’t cure your MS, but it might help manage your anxiety and help you override your annoying, internal negative thoughts. 

Your word of the year should resonate with you. Your word should move you and empower you. There’s no wrong choice. Fine, “murder probably isn’t an awesome pick. But I don’t know. Maybe you’re a crow, and you just wanna spend more time with your homies. #family

Think about your goals for the year. Is there a person, place, or thing that inspires you? What word describes them? Brainstorm a list of words that you associate with who you want to be, or what you want to do.

Okay, I have my word of the year, now what?

Put your word where you can see it. I mean, maybe sit with it for a few days before you get it tattooed on your face; but when you’re sure it’s your word and you’re ready to commit, put it on your vision board, share it on social, get in touch with Etsy and put it on a mug. Make yourself a visual reminder of your word. 

Even more important than the word you choose is the time and thought you put into selecting it. Whether or not we reach our goals or drop the ball, fresh starts, new beginnings, and New Year’s traditions allow us to self-reflect and clarify for ourselves what we want our lives to look like, and who we want to be.   

So, what’s my word?

Though I was tempted to pick “shop or “cocktail, I don’t need help with those priorities. My 2020 word of the year is “anyway”.

As in, I have MS, but Imma do it anyway.

Doing it anyway doesn’t mean pretending that MS can’t stop me from every little thing I want to do in this life. Or that I won’t experience the frustration, anger, and fear that come with living in this body.

Doing it anyway means I’m not going to let my limitations drive my year. Doing it anyway might mean doing it differently; and yeah, sometimes doing it differently means doing it shittier, but most of the time, shittier is still better than not at all. 

Doing it anyway means I will make room for possibilities, and even the possibility that all of my best days aren’t behind me—that there might be some good surprises ahead, too. I have MS, but I’ve decided to expect great things out of 2020 anyway.

Happy New Year, Trippers.

What’s your word of the year?


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Resolutions To Ignore When You Have MS

 
I love New Years, a holiday dedicated to glitter and gold, to getting dressed up and drunk and making out at midnight. It’s so ridiculously hopeful to believe the incoming year is going to be better, your best yet, when the logical part of you knows full well you’re gonna start the first day of that year with a splitting headache and barf in your hair. It’s even more deluded to expect better days when you’ve got a chronic progressive illness like Multiple Sclerosis. But here we are, liquored up on optimism (and liquor). 

I’m ready for you, 2019.
At the end of the year it’s natural to take stock of what we’ve accomplished and what’s left to do. When it comes to living with MS, it’s hard not to look back at the past and assess the damage. It can be harder still to look hopefully at an uncertain future. One where many of us are only daring enough to quietly ask the universe that we just don’t get worse.
 
When we do find ourselves ballsy enough to ask for more, we might be motivated by the feeling of running out of time. Bucket List items pile up with the pressure to do all the things that require strength and vitality ‘while we still can’. 
 
But what’s so great about Bucket Lists and New Years Resolutions anyway? For many, these lists are filled with the things we think we should do, and not the things we actually want to do; the fantasy versions of our lives that feed our egos and let Instagram know just how cool we are.  
 
Buckets are for washing floors and occasionally vomiting into. They are poor vessels for the safe carriage of our most precious hopes and dreams.
You don’t need a bossy list to remind you of your unmet potential. That’s what parents are for. If you have a chronic illness like Multiple Sclerosis, I’m here to sift through some of the most popular resolutions; to figure out which ones are worth the Bucket List and which ones you can put on the Chuck It List. And if you don’t like it, that’s cool. Having MS should be an automatic pass on all the bullshit things you never wanted to do anyway.
  

2019 Resolutions to Ignore and Embrace when you have MS: Bucket or Chuck it

Learn To Meditate: Bucket

MS is stressful. And painful. And exhausting. Meditation can help relieve stress, the perception of pain, and fatigue. I’m a smart person and at least an average breather. So, why is it so hard for me to just close my eyes and move some air? Because, anxiety. Which is precisely why this is the year I’m actually gonna figure this out. 

This session happened Jan 17 and was my attempt at a resolution last year. My own mother just told me “thinking about stuff is just as good as meditation”. By “stuff” she means shopping. Someone please keep me accountable.

Skydiving: Chuck it

A classic Bucket List item; they should call it sky-dying, because it’s basically a dress-rehearsal for a terrible and unnecessary death. I am well acquainted with the feeling of free-falling already, thank you very much. 
 
Alternative: Watch Alive in my centrally-heated apartment while enjoying some non-human based snacks.
 
 

Drink More Water: Bucket

It’s tempting to turn into a camel when dealing with a nagging MS bladder. But not getting enough H20 can worsen fatigue and lead to bigger problems than peeing your pants. UTI’s suck, can cause even more incontinence, and infections can lead to pseudo-relapses that can be difficult to recover from. The good news is that Drink More Water is the laziest, easiest resolution ever. If you wanna put something on a list that you can actually accomplish while feeling like a smug wellness expert, start carrying your glittery pink S’well everywhere, and talk annoyingly about how getting your 64 ounces has literally changed your life. 

Change Your Diet: It’s complicated

If you’ve got a chronic illness you’ve definitely had someone scream in your face about a miracle food-based cure. There are a tonne of plans that claim to positively impact MS, but there is no universally agreed upon diet. There’s exciting research happening in this area, but if you’re thinking about trying Swank, Wahls, Keto, OMS or whatevs, remember that 65% of vegans eat Burger King when they’re drunk. So. 
  

Learn A Language: It depends

Cognitive function can be a concern for people with Multiple Sclerosis, and one of the best ways to make your brain stronger is to learn a new language. Then again, we’ve all heard that English is the hardest language. If you’re still reading this, then congratulations. You already speak the hardest language. Even if you flunked high school English, you’re probably still pretty good. 
 
Alternative: Watch a foreign movie. Don’t worry. There are subtitles. Oh, you don’t even want to do that? That’s what I thought.  

Start Flossing: Bucket

Having MS means blaming all my problems on brain damage, but it turns out you can still get cavities when you have a chronic illness, and the only thing worse than having MS is having MS and needing a root canal. Plus, repeated use of prednisone can mess up the bones that support your teeth.   

See A Sunrise: Chuck it

You know what’s better than a sunrise, right? Fucking sleep. Nerve pain and needing to pee, as well as 7 thousand other MS-related things, could already be contributing to insomniac nights and narcoleptic days. If you have MS, you need sleep more than your average bear. We heal when we sleep, and lack of quality z’s can contribute to problems of cognition, fatigue, balance, pain and bitchiness. 
 
Alternative: Re-watch Before Sunrise, and eat two bags of Sunchips. 
 
Life hack: This is a sunset. It’s basically the same thing.

Exercise More: Bucket

Fatigue and muscle weakness can provide easy excuses for not prioritizing exercise when you have MS; and frankly, I look like an idiot wearing a Fit-bit. I know this because some confused Normal recently asked me why I wear one. Just because I use mobility aids to get around doesn’t mean I can’t have fitness goals, Joel. Measuring my steps helps me recognize MS trends. Not like cool, Chanel fanny-pack trends, more like personal disease progression trends.  

Climb A Mountain: Chuck it

I said exercise more, not exercise crazy. I don’t know why anyone would want to climb a mountain. I don’t even want to climb the stairs. Did you know it can cost upwards of $30k to climb Mount Everest, and you could DIE? 
 
Alternative: Literally anything that doesn’t cost money to be cold and maybe die. 
  

Stop Smoking: Bucket

Boo. Hiss. I hate you. I know. You already know smokers are jokers, and if it were easy to quit you’d already be doing it. I didn’t want to be the one to tell you, but apparently neither does your doctor; because according to some reports he’s afraid of you. But here’s why you should consider it. Smoking can make MS disease progression worse. Smoking can hasten the time it takes to go from relapsing remitting MS (RRMS) to secondary progressive MS (SPMS). The reallgood news is that quitting may delay MS progression. 


Sure, smoking looks cool, but it’s just too risky.

Join A Club: Bucket

Feelings of loneliness and depression are 12 times more common in persons with MS. Loneliness can have as difficult and dangerous an impact as the worst of what Multiple Sclerosis can do. If you are struggling, look for resources. If you aren’t struggling, reach out to those who are, and protect yourself by investing in relationships and building your own social capital. 
 

Write A Book, Go Back To School, Take An Exotic Trip: Bucket

If you have MS, you got a raw deal. Let your dx give you permission to prioritize doing the thing you’ve always wanted to do. Don’t just put your dreams in a crappy old bucket. Realize that Someday isn’t a real day, and put your goals on project status.
 
Happy New Year, Trippers. What resolutions will you ignore? Which ones will you embrace?
 
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3 Things You Need To Be Happy (With Or Without MS)

3 Things You Need To Be Happy (With Or Without MS)



Lately I’ve been waking up in a good mood, which is noteworthy because normally I wake up crusty, even a little bitchy. I can hardly be blamed for being unpleasant following a spastic, or painful night. Multiple Sclerosis doesn’t sleep and it doesn’t want me to either.   

 
But there’s something about October that gets me out of bed without shaking my fist at the sun. More than pumpkin everything, new boots, and autumn leaves, The Banker and I tend to travel in the fall when the weather is manageable and so are the crowds.
This October’s plan to celebrate our anniversary in Paris was paying dividends for weeks. When I couldn’t sleep, I was planning my travel outfits. In anticipation of a visit to Versailles, I was nerding out on the life of Louis XIV. When I was shoving kale into my smoothies I was promising myself out loud that I would soon be consuming my body weight in camembert. I had effectively turned 5 days in the future into a part-time hobby in the present. 
 
A past trip to Paris: happiness = a cheese trolley and unlimited barrels of wine.
So you can imagine my heartbreak last week when I opened an email informing me that the too-good-to-be-true discount airline with whom we’d booked was in fact, too good to be true. Bankrupt mother-fuckers. With our trip just 16 sleeps away, my new hobby became cancelling reservations, dealing with insurance claims and trying to get at least some of our money back. 
 
Why are you telling me this terrible tragedy? I clicked this bait to figure out how to be happy with MS and this is literally the saddest thing I’ve ever heard. #thoughtsandprayers
 
I know. If you’re looking for me I’ll be in all black and a lace veil until my birthday, 94 days from now. The point is, all this sadness got me thinking about how fast I went from happy with anticipation to covering the mirrors in mourning; and I realized, that yes, my would-be trip to Paris is a big fat bummer, but I’ve been consoling myself with the other things I have to look forward to, like the bottle of wine I’m gonna drink tonight, the Halloween party we can now attend, and the sweater I’m gonna buy, because my trip to Paris just got scrapped and I deserve it.  
 
But wait, if you have MS how can you be happy? I’d rather be dead than have a disability, and you didn’t even get your Make-A-Wish.
Many assume that people with disabilities couldn’t possibly live full lives, that they must be sad all the time. That’s messed up. When I was first diagnosed, I too assumed this life would suck. I mean, that’s what we’re lead to believe. And it’s true that MS sucks. MS makes my life hella difficult. 

But a difficult life doesn’t have to be a miserable one. 
 
Just as disability and disease don’t determine a sad and sorry existence, perfect health doesn’t guarantee happiness. According to some unreferenced internet psychology, when it comes to happiness the same strategies apply to everyone, regardless of ability, and have nothing to do with career success, wealth, fame, power or even that thing we’re all told you’re nothing without…your health.
 
The happiness recipe:
 
Someone to love 
 
Society has been known to send the message that people with disabilities are less deserving of love, and even that people with disabilities don’t have the same need or want for love. Maybe you’ve said this to yourself. This is some ableist bullshit. 
 
You can love your kids, your partner, your parents, the friends that are your family. Pets aren’t people, but if you’re struggling to find love amongst humans, even your cat is a good place to start (but like, maybe get a dog). 
 
Having someone to Netflix with, someone who’s on your team, who hates the same people you hate, reminds us that we’re not alone, and caring about someone besides our selfish selves can take us out of our own suffering. Love isn’t just a nice to have; it’s a fundamental need to have. 
 
 
Something to do 
 
When I stopped working full-time, the first thing I did was start a list I called Things I Did When I Wasn’t Watching Oprah. I knew I was facing an identity crisis and needed to reinvent myself. What we choose to do with our time reinforces and affirms who we are.
 
My list might look cool now – sassy blogger, world traveler, rollator super-model – but when I was first figuring it out, my list literally had things like, tried a recipe, read a book, used a fire extinguisher. It doesn’t matter what you do, only that whatever you choose to do is just that – your choice; something that matters to you. 
 
Finding your raison d’être can be extra challenging when you have a chronic illness like Multiple Sclerosis. MS can steal your purpose. MS can rob you of the physical resources needed to do some of the things you love most. It’s not always easy, but the more we can figure out how to make empowered choices, even little ones, the less we feel controlled by external forces. 
 
Something to look forward to
 
I don’t know about you, but I spend a lot of time in Anxietyville, contemplating worst case scenarios. And while I still suck at meditation, you don’t have to convince me of how thoughts about the future can influence the present. Fortunately the power of anticipation can also be harnessed for good.
 
The standard remedy for anxiety is to live in the present, but sometimes the present straight-up sucks, and that’s when mindfulness needs to STFU. Having a stash of future rewards you can call to mind can get you through rough moments and bad days. It doesn’t have to be big stuff like trips to Paris, either. If I’m being real, most of my future-reward daydreams are about clean sheet day, or Miss Vickie’s chips. 
 
MS is tough. I will never tell you to count your blessings, keep a gratitude journal, or smile through your bad days. FTS. I already told you I stopped listening to Oprah. You are entitled to every negative emotion that comes with this shit-show. Grieving the losses that a progressive debilitating disease brings is healthy and necessary for well-being. 
 
So, I will continue to worry about the future, rage about the present, and lament what this disease has taken from me. But I can’t live there. It’s exhausting. Most of the time, I’m setting realistic goals, making plans, and chillin’ with my homies; doing the things that keep me going, that remind me – an MS life can be a good life. 
 
So, who do you love? What are you doing? What are you looking forward to?
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How To Love Your Morning Routine With MS

No alarm clock required. 


There’s a lot of buzz right now about morning routines. They’re the latest trend promising your best possible life, though they’re nothing new. Everyone from Sigmund Freud to Steve Jobs had one, and I’m not above taking health advice from dead geniuses. Wellness experts all over the inter webs assure us that the path to perfect happiness and peace of mind starts with a routine that includes things like lemon water, meditation and making your bed, because studies have shown that people who make their beds are more likely to be actual millionaires.  

But morning routines are highly individual. If you’re already a millionaire or tidiness isn’t your thing, that’s cool. Studies have also shown that making your bed provides a cozy home for skin eating dust-mites. Whichever side of the bed you wake up on,  there’s a morning routine for everyone, and for those of us with chronic illnesses like multiple sclerosis, morning routines can be especially beneficial. They can help you:


Feel like a boss (even if you don’t have a job)
Medical retirement means never having to put on pants. This sounds great at first but can quickly lead to feeling like a garbage person. My morning routine makes me accountable to myself. It lets me tick off some easy to accomplish goals that make me feel like I have my shit together. 

Gain some control
I’m a type-A personality trapped in the body of a whatever personality type is the lazy and passive-aggressive one. Chronic illness robs me of what little certainty I think I have in this life, but a routine is something stable, a way to feel like I have a say in how my day’s gonna go. What’s more, doing the same thing regularly is a way to check in and see if today was different than yesterday, making it easier to spot changes in health and address them quickly.

Minimize decisions
Our days are filled with decisions. I only have a limited amount of them in me, and I don’t wanna waste them on what to have for breakfast, because even small decisions are exhausting. Having a routine means you can coast on auto-pilot while the pillow lines work themselves out of your face, conserving precious mental energy for more important choices, like what to binge on Netflix.

Nama-slay, bitches.

My MS Morning Routine

Wake up when I feel like it
Thanks to multiple sclerosis wreaking havoc with my life, making plans for the morning is the last thing I ever want to do. Let’s be clear: a routine is not the same as a schedule. Schedules are for normals, who sleep through the night and can balance on two feet in the shower, whose bodies cooperate enough for them to be accountable to that asshole Father Time. If your well-being doesn’t start until noon? Well, that’s when your morning routine starts. Fuck the sunrise.

Put on a bra
This sounds obvious but for a long time (like years) I didn’t start my day with this step. I was spending the better part of most days alone with the dog. She didn’t care, and she has, like, 6 tits. Alas, I have evolved past the canine. For the last few years, I start every day by putting soap on everything that needs it, and then getting dressed into clothes I didn’t already sleep in (but will probably nap in later).

Go for a walk
I’ve started roaming the long hallways of my condo like a ghost. In an effort to be active all day, I get up and walk the halls every couple of hours for about eleven minutes at a time, more if it’s a good day. Using my rollator, I think about each step; heel, toe, shoulders back, don’t swing the leg, don’t drag the foot, heel, toe. This slow, concentrated walk is almost meditative, which is just another way to say boring, but it reminds me that I’m still walking and that’s something positive to concentrate on.

Make coffee, skip the dishes
Next I make coffee, take my meds, and update my Fitbit. Since I take approximately 7 thousand pills and supplements each morning, this takes awhile, but forces me to drink at least one huge glass of water, which is great because getting enough water is a challenge. If the coffee isn’t quite ready by the time I’m done my meds, I’ll take a quick, guilty peek at Insta, but I try to stay off my phone until after I’ve finished this next step.

Journal and puppy time
This is the reward part of my morning for having shaved my armpits and walked a thousand steps. I curl up with my journal and coffee, and my 60 pound dog climbs into my lap. I’m not writing a gratitude journal about how I’m thankful for babies laughing or the smell of cinnamon. Who am I, Oprah? No. I put aside this time for processing my own narcissistic life. This isn’t advice, guys. I’m just a blogger making shit up.

Breakfast
I always have a smoothie unless I have to be somewhere and don’t wanna have to pee. By the time I get around to making this it’s usually been awhile since I last ate, which is ideal because delayed breakfast helps me get into ketosis which is a whole other thing. At this point I’ll drink my smoothie while checking email. 

That’s it. That’s my weekday morning ritual. Depending on how much time I spend with my coffee and burn-book, this whole routine takes about an hour and I’m ready to take on the world (or, you know, go back to bed).

What’s your morning routine? 






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5 Things I Did Right Last Year & What I Want Out Of 2018

2017 went out with more of a whimper than a bang. I spent a solid chunk of December dealing with disease, mired in fear, and feeling pissed at myself for crying at Christmas. Facing another new year with multiple sclerosis while taking stock of 2017, it’s tempting to tick off a list of things lost, things I’ll never do again. Which is depressing AF. You don’t want to read that self-pitying barf, and I must force myself to agree, it’s way more appealing to look at the blank slate of possibilities for 2018, than to obsess over the ways in which 2017 went off the rails. 

But, making resolutions can feel like we’re announcing our shortcomings. Like we’re publicly identifying the (usually trivial) ways in which we feel we suck. And maybe that’s why so many people hate them. Nobody wants to feel like they’re failing at life. Gross. Building a brag-sheet of last year’s wins can help us recognize just what we got right, and give us the confidence to sign-up for what’s to come. Taking stock of 2017 helps me realize that change is possible. Heck, anything is possible. And isn’t that what the new year is all about?
There is no suck. Only degrees of awesome.

How I Slayed in 2017

Travel
Travel is hard when you have a dumb disease. With its stupid cobblestones and complete lack of curb cuts, Rome kicked my ass last year, as the least accessible place I’ve ever been. I left Italy feeling smug and secretly satisfied at the fall of the Roman Empire. They deserved it. Despite this, I was truly glad I came and saw and conquered. Instead of feeling defeated, I felt inspired to travel more, and to places even further outside my comfort zone. Because as I’ve said before, if not now, never. 

And I don’t believe in never. 
Stopped Singing
For most of my life, singing was a major part of my identity. For a long time, I believed every lesson, every hour spent practicing, every moment of performance, was saving my life. And it was. Until it wasn’t. It’s too long and boring to get into here, but MS fucked it up for me, and as my body weakened I began to feel diminished by the very thing that once made me feel invigorated. After trying for too long to keep it in my life in any capacity, I was finally able to accept that singing was no longer bringing me joy. I walked away, and somehow, felt relieved. 

Memorized All the Words to Despacito 
Okay, I didn’t totally stop singing. I mean, I’ll never stop Beliebing. 

Gave up gluten, sugar, and dairy
Relax, guys. It’s not like I gave up bacon. This lifestyle sounds so crazy hard but I swear to you it hasn’t been. I think it’s partly because I’m good at making healthy food taste like not garbage, and partly because my tummy and neurogenic bowel feel legit better without cheese. Mostly though, it’s because it’s a way to feel I have some control. When I go to sleep at night thinking there’s nothing that can be done for my progressive MS, I quietly tell myself that maybe this diet will help. That tastes better to me than any croissant ever could. And that’s saying a lot. 

Became a glamorous, rich lady
When I was a teenager, I interned at an opera company where my fancy but terrifying employer would get her hair ‘set’ every week. My blue-blooded, bougie-boss was so sniffy and serious, and guys, did I mention terrifying? Like Anna Wintour, but taller and Italian. I definitely wanted to be her when I grew up. Then, last summer, MS finally gave me the justification to be a little more like, uhm, let’s call her Mary

Because, showering is hard. 

As MS worsens, the thought of holding my arms up long enough to dry my hair makes me long for the days of wearing wigs and obscene amounts of cheap perfume. So in July, I splurged on a package of blow-dry’s and now I can never go back. Can I afford this? Maybe not, but I’d sooner give up groceries than go back to washing my own damn hair like a nobody.


Clearly I nailed 2017. I’m high-five’ing myself for what were obviously some kick-ass self-care habits I’ll be bringing with me into the new year. But self-improvement never stops. It’s what makes you better than other people. So here are my goals for the upcoming year:

What I Want In 2k18

Exercise
Yup. The old New Year’s cliché. But hear me out: there’s so much compelling research about the effects of exercise on MS that I’m convinced it’s time to step up my game. I’ve always exercised and I work with a great physiotherapist (#megan). But there’s no reason I can’t be at the gym every freaking day. Even if it’s just 5 minutes. Because 5 minutes turns into 6, and 6 becomes 7, and 7 becomes slower disease progression than if I’d just sat on the couch eating raisins and watching The Crown. I know what you’re thinking: ‘This sounds like Sophie’s Choice’. But here’s the thing. The gym is in my building. Which means, I have time for weight training and binge-watching. (Wait. Were you thinking ‘raisins are disgusting’? Then screw you. Raisins are a delicious snack.)

Minimize Time Sucks
It’s hard not to get sucked down an internet hole when you write a blog; when you’re on your laptop at all hours so you tell yourself you’re “working”. But let’s face it, I’m mostly sucked into online shopping and celebrity gossip. OMG PRINCE HARRY AND MEGHAN MARKLE ARE GETTING MARRIED, GUYS. Like, who am I to ignore living history? Furthermore, what kind of feminist would I be if I didn’t know why we’re all pissed at you-know-who, and you-know-who else, and you-know-who else, and so on forever. Strike this. This is no time to cut back on the internet. I’ll just have to cut something else, like laundry or brushing my teeth.  

Peace
Obviously world peace and blah, blah, but what I’m really talking about is inner peace, and this might be my biggest commitment to change this year. MS isn’t going anywhere, and I need to get my shit together, figure out how to maintain my sanity when symptoms are at their worst and my brain feels like it’s gonna explode. I think this means learning to meditate and finding some counselling that is more reputable than fortune cookies and the occasional episode of Dr. Phil. I’m going to detox my mind and I’m going to do it with help. 

Happy New Year Trippers. Cheers to possibilities, blank slates and optimism. And if you feel like sharing your own ’17 brag-sheet and 2k18 goals, I’d love to hear them. 

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Stupid Things I Did Last Week In Defiance Of MS

 
 
You think you can stop me, MS?


Last week I decided I wanted to go to the seriously spooky, grown-up haunted house Legends of Horror at Casa Loma, Toronto’s gothic revival mini-castle that sits just up the street from where we live. For most of October, we could hear the terrified screams of visitors to the exhibit from our balcony, and I wanted in. I had an inkling that this indoor/outdoor 2 kilometre ghost-walk wasn’t maybe the most accessible activity in town, but I ignored that inkling and bought tickets anyway.
  

How stupid could I be?

The day before we were set to go, I went back to the Legends of Horror website just to see how prepared I needed to be. I read something advising guests with “physical ailments” not to participate. That seemed a little too broad and ignorant for me, those of us with so called “physical ailments” not all sharing the same limitations or abilities. Plus, they also said it was “not ideal” for pregnant women, which lead me to seriously question what kind of person was making the decisions about who should and should not participate in what’s really just some interactive theatre. 
 
I emailed the venue to get some intel, and was promptly told the exhibit is not recommended for walker or wheelchair users; that there were some stairs and tunnels. This still wasn’t very specific. Like, just how many stairs are we talking about? Note: Sometimes people with mobility aids can do a few stairs.
 

Because FOMO

I was conflicted, and not really sure if this would be too much for me, but the thought of sitting at home with Halloween FOMO while my friends were out having fun, was too much to bear. And since I don’t have a walker or a wheelchair (I have a rollator and a transport chair), technically, the suitability information provided didn’t apply to me. Let’s do this.

 
The Banker suggested we bring Optimus Prime my convertible transport chair; that I walk as much as I was able; that he would push me as needed, and carry OP up any stairs we might encounter. Problem solved. I emailed the venue with my awesome new plan, and asked again just how many stairs we were talking about.
 
This is what they said:
 
“I would still suggest that is Not a good idea to carry that up and down the ‘uneven terrain’ that is part of this Legends of Horror experience.”
 
Aside from the callous reference to Optimus as “that” (rude), this was GREAT NEWS. “Not a good idea, is not a hard no. And those quotation marks around uneven terrain? That was enough to convince me that the terrain might actually be pretty even. Grammar matters, people. Plus, they never did answer my question about how many stairs there were, so I decided it was two flights. Two-and-a-half, max. It would be difficult, but I could swing it. Because here’s the thing Casa Loma doesn’t seem to get: People with mobility aids have a whole spectrum of ability. Not all disability is the same, and it’s not cool to just decide something isn’t available to everyone. Just give us the facts, and let us figure it out for ourselves. 
 

In defiance of MS

 
The night of the show, we bundled up and got ready to get scared. We rolled up to the venue, and a visibly alarmed ticket-taker took one look at OP and said, “Uhm, this is one-hundred-percent not accessible”. I was like, “Whatever. We’ll figure it out”.
 
And we did. In the end, it was like, 15 flights of stairs, in the dark and under a fog machine.  And what took most people an hour, took us well over two, plus a lengthy break at the bar at the midway point. It was actually completely unreasonable for me to have attempted this. 
 
And I’m so glad I did. 
 
In a disease where decline seems inevitable, it’s hard not to measure the passing of time by a yardstick of things I can no longer do. Anything in the grey area of what might be a little too tough or even reckless, forces me to say to myself, “If not now, never”. 
 
So what? It’s just a stupid haunted house. (It was not stupid, it was freaking amazing.) A fun night out with friends doing something a little different, is an experience most take for granted. But there’s this feeling I sometimes get when I’m most aware of MS insidiously creeping up on me, and chipping away at my options. It’s the bittersweet realization that I’m doing something I’ll never do again. It’s the unspoken knowing that, this time next year, I’ll not be physically able to do whatever it is I’m struggling to do this year. Experiences take on added meaning when you realize:
 
This is the last time I’ll do this. 
 
I didn’t think this haunted house thing would turn into a bucket list accomplishment, but I woke up the next morning feeling satisfied I’d experienced something unique and cool, and like I’d kicked some ass, those stairs being way scarier to confront than the wailing banshees and severed heads trying to spook us at the castle. My ill-advised night out was a kind of Fuck You to MS.  
 

My squad

I must thank The Banker who dodged zombies to haul OP up and down all those steps like a damn hero. And thank you to my squad of patient friends, Trace, Lisa, Chris and Peter: I realize it’s extra terrifying to slow-walk through a graveyard. Thank you for not handling me with kid gloves; for not trying to talk me into the cautious, reasonable, thing, and for supporting my choice to keep bulldozing ahead, even when it seems really fucking stupid.
 





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