Month: May 2020

How To Find MS Friends With (Health) Benefits

Ever met someone randomly and found out you have something unusual in common and squealed “OMG ME TOO!!!” Why do we love that so bad?

How To Find MS Friends With (Health) Benefits

This blog post is sponsored by MS Healthline. All opinions are my own. I have partnered with MS Healthline to lead discussions on style, sexuality, and representation. Scroll to the end for deets.

When I was diagnosed with MS back in 2001, the internet was for nerds or creepers with hotmail. I assume. I mean, I honestly can’t remember how life was before Instagram, but I think I spent a lot of time at the mall, hiking up my low-rise jeans and listening to one whole CD at a time. Facebook wasn’t born yet. Amazon was just a river; and, if I’d wanted to know where, I would have had to go to the library to look it up. No thanks. But, when instinct told me I needed to connect with somebody—anybody who was dealing with the same unknown future MS had dealt me—I had to seek them out at a support group in a sketchy basement somewhere in the east end of Steel Town.

Oh, boo-hoo. Everybody’s future is uncertain. You don’t need someone with MS to relate to that. 

Not to diss my friends and family, but our emotional needs can’t all be met by one person. I love my husband, but The Banker isn’t that fun at the nail bar, nor is he qualified to provide outfit approval. (That pink eyeshadow fail was not his fault; it’s Covid-times and I don’t have access to my usual squad.) The point is, it takes a village. If I want to polish off a bottle of rosé and gossip about the neighbours, I’m calling Lisa. If I wanna be talked into buying just about anything, that’s a job for Tracy. And if I need help hiding a body; well, I’m not naming names, but you know who you are.  

Despite the love and support I get from my friends and family, it can be exhausting and futile to try to explain MS. When it comes to managing my MS, I’ve got a team for that too. In addition to my posse of medical experts, if I want the latest MS research dumbed-down for me, I’m emailing Wheelchair Kamikaze. I’ve been known to panic-text Bethy Bright and Dark while on steroids, and there are things I’ve said to Darcy that I’ve never said to anyone. Darcy can handle it. 

Social networks aren’t going to cure your disease, but they are going to make it better. Loneliness has been proven as deadly as smoking. Covid is making isolation worse for everyone, and that kind of stress can impact sleep patterns and eating habits, and even shorten lives. If you have MS, you need an MS bestie. You probably need two. Why not? They’re free!

Reasons why MS friends are friends with (health) benefits. (I mean, unless you’re Dan and Jen Digmann, then it’s all the benefits 😉)

Having MS friends lessens feelings of isolation

Why does misery love company? I wouldn’t wish this on my worst enemy, but my heart skips a beat when I meet someone with MS. Intimacy is created by swapping secrets; but, what happens when your secrets are completely unrelatable? I’ve fantasized about a magical compound where everyone has MS (like Crip Camp, but with fewer STIs and an open bar). Not because I want the whole world to have MS; but if everyone around me did have MS, I wouldn’t feel so freaking different all the time. 

It’s validating

Connecting with other interesting, fun, cool, smart, accomplished, funny people who have MS is a reminder that I’m still those things too. It’s a reminder that it’s okay to have MS; that having MS is just another way to be human. Duh.

What’s the BFD?
Source: https://tenor.com/IZCa.gif

Symptoms and freakouts happen

MS is often portrayed in a sanitized palatable narrative that can make you feel like you have the ‘wrong’ kind of MS if you don’t recognize yourself amongst the happy-go-lucky ice-cream eaters who appear unaffected by the disease. So many of us are encouraged to hitch our wagon to best-case scenario outcomes, that it can feel like we are the outlier, the exception—even the failure—if symptoms persist or disease worsens. It can be a relief to know someone else struggles the same way we do.

Connecting provides an outlet

Most of us have been told not to let this disease change us. The pressure to be the ‘same you’ is a toxic message disguised as encouraging advice that doesn’t hold any space to process what we’re going through. We may try to keep up because we don’t want to be excluded. We might keep our feelings to ourselves because we don’t want to be a burden; we don’t want to be pitied; and we don’t want to be ‘all about MS’. With MS friends you can be the person you are, instead of the person you were. 

Finding MS friends means discovering resources

There are so many life hacks I’ve sourced from other Trippers. There are even symptoms my docs have shrugged off: my freezing cold, purple fucking feet par exemple. Connecting with others who have the same gross photos to confirm my suspicions keeps me from the insanity of feeling gaslit. 

It’s reassuring, strengthening, empowering

When I was learning to drive, I remember feeling like it was this huge, impossible thing, until I reminded myself of all the not-quite-as-smart-as-me bros I knew in highschool who already had their licences. I told myself if Ferris Rafauli could learn to drive, then so could I. (Don’t feel bad for Ferris, guys. I just googled him, and—holy shit—he’s designing homes for Drake. Who’s the smarty-pants now?). The point is, seeing other people handling their MS, reminds me that I can too. 

It reduces distress

All of this sharing can have the effect of chilling us out. Every now and then we all need to be told everything’s gonna be okay; and, nobody’s better qualified to testify than someone who’s actually limped a mile in your safety shoes or slept on a plastic sheet. 

Pay it forward

Are you good? Do you have your MS shit together? Then you’ve got an opportunity to be there for someone else. You don’t have to be an expert with lots of tips and advice. Being able to say “I see you. I know you’re not drunk; but if you wanna be, I’m here for that too”, can be a lifeline to someone else with MS.

Get empowered

When we see others advocating for themselves or demanding better treatment or care, it encourages us to do the same. Your MS tribe is about surrounding yourself with the people who are like you, and the people who can help you become the ‘you’ you want to be. 

The language around disability and disease is so often infused with calls to battle that it can be confusing to feel love for any part of ourselves that we associate with MS. Ultimately, my love for my real, and virtual, MS friends is a way of loving myself. 

Okay, cool. But where do I find all these awesome friends with MS?

We’ve come a long way since 2001. I don’t miss trucker hats or my pencil-thin eye-brows, and it’s never been easier to find and connect with others who have experience with MS. The MS Healthline app is a great tool, because it goes one step further and matches you with those who are not only living with MS, but are of a similar age, or taking the same medication. Plus, there’s way more to the app than making friends, including some guided live chats, brought to you by some OG MS’ers like moi.

“The antidote for 50 enemies is one friend” – Aristotle


To join the chats, download MS Healthline on iPhone or android and make sure your notifications are turned on, so you know when chats are happening.

Here’s what’s coming up:

June 10th 4pm EST – Product Round-Up: I have yet to meet a crisis I couldn’t shop my way out of. Tune in for my recommendations on everything from where to get the new ‘It’ bag to who makes the best catheter.

June 17th 4pm EST – I See You: The importance of representation, and of seeing MS reflected in a realistic way throughout social and traditional media. 

June 24th 4pm EST – MS Can Mess With Your Mojo: Let’s talk about intimacy and MS.

See you in the chat room!

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Anxiety, Tears, Tequila: Welcome To Quarantine Fatigue

I’m coming for you COVID.

Remember when I bragged about not freaking out about the apocalypse because having had MS for 19 years has trained me to roll with life’s uncertainty? Well, that was 59 days ago. I was 70 years younger then. My bluff has been called and quarantine fatigue has announced itself with a teary, boozy meltdown. 

Out of an abundance of caution – I know what a cold or flu can do to my MS; I am NOT getting COVID – I hadn’t left my apartment in 56 days. For the most part, it’s been fine. Well, manageable. I like my apartment. I like my husband. I’m grateful for the things we’re supposed to be grateful for; food, shelter, track-pants. I’ve put my head down and focused on doing what needs to be done to keep myself and others safe. 

What I’m beginning to understand is that safe basically means alive. It doesn’t necessarily mean healthy. While I’ve successfully (so far) guarded myself against COVID, my overall physical well-being has taken a hit, and as for my emotional health, well, let’s just say I’m starting to come a bit undone. 

The physical cost of quarantine for me has been lack of physio, sunlight, sleep, and exercise. I’m not getting the infusions I’ve been prescribed to help calm down my MS. Happy hour is happening earlier and more frequently, and I don’t know what the hell happened to my Whole 30/FMD diet, but I am aware that in the absence of the normal things that bring us joy and pleasure, filling that void with baked goods and Miss Vickie’s is an easy fix. I’ve lost many things because of the lockdown, but what I’ve gained is a steady 3-5 pounds.

The emotional cost of quarantine is harder to measure. I should be in DC right about now, with a fresh mani and a new dress, to speak at the MS Society’s On The Move event. Instead, I’m wearing an 8 year-old t-shirt with a hole in the armpit, staring at the fingerprints I’ve left on the wall, waiting for the next Zoom party to give me an excuse to brush my hair.

You didn’t really think I was gonna show you that ratty T-shirt, did you?

On Friday, The Banker announced he’s been mandated to continue banking from home until the end of July. And I was like, duh. No surprise here. But the reality is sinking in as I started to do the math. We’ve been doing this for almost 8 long weeks. The end of July is 11 weeks away. We’re not even at the half-way point. And I am starting to lose my chill. 

I’m trying to be brave and resilient and thankful, but quarantine fatigue is real. I know there are many struggling more than I am, but that doesn’t make me feel better. It only makes me feel like a spoiled selfish twat for complaining. After waking up Saturday and feeling that Oh right, it’s Groundhog Day, please don’t make me go to the living room again pit in my stomach, I grudgingly decided to face the day. Even though it fucking snowed—in the middle of May—I managed to ignore my feelings of anger and frustration and sadness. Or so I thought. When evening came and The Banker noticed I was moving with a little more of a Frankensteinian vibe than normal, he offered to help me with some stretching. 

I don’t know why this loving gesture is what triggered the tears that lead to the tequila, and a decision to get me out of this apartment the next day. Maybe it’s that I don’t want my husband/coworker/roommate/housekeeper to also now be my physiotherapist. Maybe it’s that I’m tired, and need a decent night’s sleep. Maybe it’s that feelings don’t go away, and the only way out of them is through them. 

I MISS BRUNCH SO BAD

Even before my health was a factor, I’ve always been the kind of person who wants to get the most out of life (check my Insta for the receipts). My MS diagnosis jacked-up my seize-the-day MO. MS has cost me so many things, I live by the mantra: If not now, never. Because, as hard as it is to write this, the realist in me knows, with a gut-wrenching certainty, that my strongest days are behind me; that my MS gets worse. That doesn’t mean I don’t realize there are lots of things I’ll figure out how to do as MS progresses and continues to slow me down; only that I endeavour to do as much as possible on these two legs while I still can. 

There are two Stay Home narratives cruising around the interwebs right now. There’s the bossy directive to shower every day and pour yourself into new hobbies; learn a language, start a garden, write a novel, whatevs. That was the first thing we were told to do. The second narrative is the backlash that recognizes we are all in shock and grief. It’s the narrative of self-care that tells us to free ourselves of the pressure to do or be anything right now; to allow ourselves to grieve and eat banana bread and just exist. 

I get it. I see both sides. COVID happened so fast. It was a stunning reminder that anything – ANYTHING – is possible, and that nothing is guaranteed. I feel punched in the throat with the warning of how little time any of us has, and I don’t want to just pass the time. Even if it’s a really shitty time. 

Because how can I rationalize wishing away time when this is the time that I am still walking? Still able to speak? It’s hard not to feel like I’m using up all my last, best days of semi-functional legs in this tiny apartment, waiting to start living again. 

If my philosophy of carpe-ing the fuck out of every god-damn diem holds up, how do I make this time count? Even as things start to open up, COVID isn’t close to being over. How do we make sure we’re still living and not just existing?

This. Is. Hard. 

I miss my life! Is what I want to say, but this is still my life. Somehow, I have to normalize this.  

And so, yesterday, I finally left the apartment. After 56 days of looking at these four walls, I put on my military-grade face mask and braved the elevator to the underground. The Banker took me for a drive to remind me of what the outside world looks like. We parked on a quiet street where I could walk for the 15 minutes my legs would carry me – about 13 consecutive minutes more than they’ve carried me in the past 56 days. I was stiff. The walk was difficult and disheartening, and…good. I went out, and I will go out again. I will keep living. 

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I Want You To Be On My MS Walk Team!

No walking required!
photo: Alkan Emin

Join my virtual MS Walk Team: Team Tripping On Air!

Long before I was diagnosed with MS, the only team I would have qualified as captain for would have been something nerdy and non-athletic. Guys, I founded a stamp club when I was 11. (Shout out to all the indoorsy philatelists out there.)

My hobbies included choir, and being friends with the teacher.

With this year’s annual MS Walk going virtual, I’m finally ready for my varsity jacket, whistle, lifetime supply of Captain Crunch, and whatever other stuff Captains get for captaining. Because a virtual MS Walk means I don’t actually have to walk, or do anything remotely athletic. In fact, this year, the MS Society of Canada is encouraging us to come up with our own challenges to raise awareness and funds under the hashtag #wechallengeMS—and I am so here for it. 

What is #wechallengeMS?

#wechallengeMS means your advocacy is up to you. If you also had teacher besties, you could make yourself a reading challenge or a math challenge! Too cool for school? How about a cooking challenge, or gaming, or gardening; you could even do an athletic challenge and STILL BE ON  MY TEAM. The sky’s the limit, Trippers. 

You are also invited to take part in my challenge, the #MSLemonChallenge. 

Lemon Challenge? Sounds like it sucks.

It does suck! Because MS sucks. But, people with MS have been turning the life-lemons we’ve been given into lemonade since forever. Help raise awareness by challenging your friends to see who can eat a lemon the fastest, or film yourself eating a lemon while trying to keep a straight face. I want to see what my teammates are doing; so, share your videos with the hashtags #TeamTOA #MSlemonchallenge and #wechallengeMS, and I’ll share your posts to my stories, which you can follow here and here.

The battle to determine who thinks MS sucks more.

I want to captain Team Tripping On Air because I’ve seen what this community can do, whether it’s connecting and sharing MS stories and life hacks or re-shaping the narrative of what disability looks like (#sicknotugly, #babeswithmobilityaids), there’s strength in numbers, and nobody is better at raising awareness about MS than you guys!

And speaking of numbers, my goal for the team is to raise $10k,  and also to become the biggest team this walk has ever seen. I may not be athletic, but I like to win. I would love to have someone from every province represented. 

The ’rona is at the top of the list of all our concerns right now, and props to everyone for doing what needs to be done to ensure the safety of everyone around us. When the virus settles down and life goes back to something more familiar, those of us living with MS, are still going to have MS; and, support for ground-breaking research will be as urgent as ever. 

With that in mind, I’d like to invite all of Canada to be on my team this year: Team Tripping On Air. 

But wait: Here’s the best part!

We’ve established that I suck at sports, but my superpower is throwing great parties. Everyone on Team Tripping On Air will be invited to a Zoom sesh on Sunday May 24th where we can share in my favourite activity: brunch. I’ll answer some of your questions and we can get to know each other. Plus, I’ll be giving away a choice of TOA bracelets to someone on the team. 

Brunch, bitches!

More is more!

If you’re not in Canada, but still want to take part in this par-tay, we’d love to have you! Just note that tax receipts can only be issued to Canadian donors. 

Let’s make this the strongest team ever! 

Click here to sign up! And please comment with where you live, so we see how far Team Tripping On Air can reach!

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Is Disability Virtue Signalling Really A Problem?

Disability virtue signalling?

One day, back in the before times, I was on my way to get my monthly MS blood-work done, and as I slowly rollatored my way to the entrance of the lab, I heard the thumping of feet running on pavement behind me. As I reached for the automatic door opener, a woman dove in front of me at the last second, and, with all her body weight, slammed against the big round button. I wanted to say “Seriously?”, but she was so damned pleased with herself that I felt compelled to dismiss her virtue signalling, and sweetly thank her for literally saving my life. 

I wish I could say that was the only time someone hurled themself in front of an elevator to swoop in and push the button, as if they were taking a bullet for me. I wish I could tell you that the last time someone tried to tie my shoelace was when I was 4. I wish I could tell you that only once has an Uber driver attempted to buckle my seat-belt. I’m not sure what it is about my slow walk that suggests my arms don’t work (they do), but it’s not like these do-gooders have taken the time to think about what I might actually need. Because all of this peacockery isn’t so much to help me, it’s to show me that they care; that they want to help; that they’re one of the good guys. And how can I be mad at that? We need people that care.

And, I’m not mad at it. Well, not exactly. But I’m something.

Because what this behaviour amounts to is Virtue Signalling. And we all do it. All the time. (Okay, maybe not everyone. If you’re one of those man-spreaders on the subway who pretends not to notice that someone needs your seat, this post isn’t for you. Go back to your cave.)

Probably misses his cave.

Virtue Signalling:  a conspicuous but basically useless action or good deed that shows off how awesome you are. Gross, because who wants to be someone else’s good deed. 

As much as I’ve come to recognize virtue signalling for what it is, it’s also something I’m totally guilty of. (Guys, I just told you we all do it.)

Here are some excruciating examples of my own virtue signalling. 

  • Recently, in Mexico, my face hurt from smiling and saying ‘gracias’ so much, because I needed the resort staff to know I don’t think they’re all murderous rapists (but like, where can I score some cocaine?). 
  • I gushed my congratulations when I was reintroduced to Claire, my neighborhood cheese-monger, formerly known as Hugh.
  • Back when burkas were a federal-election issue, I considered wearing a head-scarf when my Muslim girlfriend was being continually harassed. 
  • I always over-tip our housekeeper and pointedly ask about her son by name, which is a big fucking deal, because I have family members whose names I can’t remember (Is it Sidney or Sydney? I DON’T KNOW). 

I cringe writing all of this. I would way rather confess to peeing my pants at the mall than admit to any of this way more embarrassing behaviour, but here we are.

Just kidding about the cocaine, guys. Don’t do cocaine.

I did all of these trashy ass things because on some level I wanted people to know I’m an ally. I’m on your side. I support diversity, and religious freedom and LGBTQ communities. Just like that misguided COVID celebrity sing-a-long, the last thing I wanted was to inadvertently condescend to anyone who doesn’t enjoy the privileges I do. Like Will Ferrell’s confusing af performance of Imagine, I tried! 

Also like Will Ferrell, I haven’t showered or brushed my hair in a minute.

My heart was in the right place. Right? 

Sure. But who cares? Virtue signalling is basically showing off, and nobody likes a show-off, Kanye. But it’s hard to call out virtue signalling because it seems harmless, and intentions matter; and, in all of these examples the intentions were good. There is, however, a reason we should care about this kind of virtue signalling. 

When these less-than-helpful kindnesses happen to me, I realize they don’t make me feel better or supported. They just make me feel different. And never in a good way. Just as I’m sure all the people I gave a misguided fist-bump of support to, more likely felt othered than included. 

Yes, these are teeny tiny slights. The price we pay to live in a society where we’re all still figuring out how to process our differences. But these kinds of microaggressions are like mosquito bites. If you only get one a year, you’re not going to dwell on it, let alone get malaria. But if you get mosquito bites every time you leave the house, you might start flailing your arms in defence anytime someone new gets near you.

Virtue signalling isn’t about the causes we support. It’s about our own egos and identities. Telling people we’re on their side in these useless ways, doesn’t actually do anything to affect change (#iamcharlie but I can’t remember why). But, just because you’re virtue signalling doesn’t mean you don’t care. In fact, you probably do care (terrorism = bad, satire = good).

Most people, I think, are decent, but with so many causes that deserve our attention, it’s hard to care about the ones that don’t directly affect us. It can take all our resources just to look out for ourselves and the people we love. The path to being a true ally involves getting to know someone who’s different, either IRL, or through quality story-telling. 

Whether it’s directed toward persons with MS, some other disability, or any other  marginalized person or group, virtue signalling is basically about being weird. The good news is that most of us have got each other’s backs. We’re getting better at this whole being human thing. . It’s about knowing better and doing better.

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