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Medical Assistance In Dying And MS

*If you need support, call the National Suicide Prevention Lifeline at 800-273-8255, or text ‘start’ to the Crisis Text Line at 741741

When MS Makes You Consider Medical Assistance In Dying (MAID)

When I was first diagnosed, I wondered if there would ever come a time when MS would make me not want to live. It’s generally discouraged to speak openly about our darkest and most desperate contemplations, but entertaining worst-case scenarios feels like a pretty natural–maybe even reasonable–thing to do when you find out you’re gonna be sick for the rest of your life.

MS is marketed as a manageable condition. We now have more than 20 disease modifying therapies that promise to make MS boring. And let the choir sing, because these drugs are game-changers for many. But not for all. We can’t ignore the reality that for some people, MS can be so severely disabling that life with MS becomes unbearable. 

One of the biggest surprises of my life is how much more MS I can handle than I once thought I could. Despite my ongoing discovery that a difficult life doesn’t have to be a joyless one, when new symptoms appear I still find myself dipping my mostly-numb toe into the water of  ‘what will my threshold with this disease be’. 

MS is a bfd, and by the power invested in me by God and the internet, I grant you permission to freak out about it from time to time. 

That said, I don’t want you to live there. The occasional existential meltdown is not the same as living with the profound feeling that you can’t go on. I want to acknowledge what those of us with MS are up against and to consider what we can do to protect ourselves from the worst of what MS portends. I also want to acknowledge that for some, death with dignity can be a rational choice.

Who is at risk? 

Suicide risk in the MS population is twice that of the general public. There’s a difference between a quality of life that has been so diminished by severe progressive disease that life becomes intolerable and a suicidality that may be influenced by transient or modifiable factors. When 50% of people with MS will experience a major depression–a massive risk factor for suicide–I feel like it’s up to us–the people living with the disease—to tease apart the difference.

What happens when MS isn’t manageable?

When Canada introduced Medical Assistance In Dying (MAID, 2021) for serious incurable “disease, illness, or disability”, I felt relieved that MS was on the list of qualifying conditions. In my own end-of-life fantasies, a last-ditch trip to Switzerland seemed like the only option for a dignified self-determined death. While dying with jet lag seemed particularly cruel and unusual, death by drug-laced chocolate made the effort seem worthwhile. 

This is how they do it, right?

While my mostly apathetic, half-assed contemplations of an imaginary future I won’t be able to handle feel largely theoretical, the existence of MAID is like a security blanket; a hall pass to a good death, reassurance that I have options if worse should come to worst. 

But MAID got a lot more real for me when fellow Tripper and Internet friend Jenny Angus reached out, first to offer me a device that had stopped being helpful for her, and then to tell me she’d applied for access to Canada’s medical assistance in dying program. 

Note: giving your shit away is a red flag that you might be thinking of checking out.

I don’t trust this bitch

The Canadian government has granted Jenny the right to die. When I asked Jenny how it felt to have someone in authority agree that the suffering her MS is causing is unendurable, she expressed relief. In a body she can’t control, access to MAID has given Jenny the ultimate autonomy.

Globally speaking, medical assistance in dying is not widely available for most people with MS. When it is an option, it’s as a last resort and the gatekeepers of access have an obligation to ensure that everything has been done to manage symptoms and optimize quality of life so that no one’s life ends prematurely.

Making life better 

Jenny is a self-described tough bitch, but her MS symptoms rule her day and have stripped her of her sense of purpose. A former athlete and artist, Jenny no longer has the hand and arm strength to paint. But has Canada, society, the world, done enough to support Jenny’s quality of life? When Jenny vented her frustration at the lack of accessible spaces, the staggering cost of MS, the stigma of disability, and the overwhelming shittiness of homecare, I asked what it would mean to her if the dismissive neurologist who mis-diagnosed her, leaving her untreated for a critical ten years, were to apologize for what his oversight cost her.  

One of Jenny’s paintings from a past life. As a former singer, I relate to how gutting it is when MS strips you of what feels fundamental to your identity.

I can accept that science still needs time to figure out how to reverse nerve damage and cure MS; but in a world where suicide is considered the pinnacle of irrationality while disability is considered a fate worse than death, it’s not enough to say that all life is precious, please don’t die. We don’t do nearly enough to make the lives of the disabled more liveable. We have let the Jennys of the world down.

So how the eff do you survive when MS seems unsurvivable?

The leading risk factors for people with MS in pursuit of an early death include level of disability, depression, and social isolation. If you wanna live that Betty White life, there are some things you can do to invest in your longevity.

Seek early and highly effective treatment

Degree of disability is a predictor of suicidality in MS. The best way to mitigate and minimize disability is with disease modifying therapies (DMTs). The earlier the better. If you’re like me, and your MS pre-dates the most effective treatments, DMTs might not be able to undo existing damage, but there’s growing evidence they can stave off new damage. 

Build your social capital

Loneliness shortens lives. Find your tribe. 

Get depression treated

If you have MS, depression should be on your radar. Don’t suffer. Get help.

Manage your independence

Ask your doctor or MS clinic for a consult with an Occupational Therapist (OT), and figure out the hacks that will help you maintain independence. And then, for the love of Miss Vickies, learn to say ‘fuck off’ to the stigma around being helped. We all need help. Reject the misguided idea that independence is a virtue. 

Get your shit together

I was shocked to learn that bowel dysfunction is a research-proven predictor of suicidality. Then I thought about how all-consuming my own bowel issues can be. I have definitely felt tempted to roll the dice on colon cancer screening just to avoid the nightmare of prepping for a colonoscopy with a neurogenic bowel. However, like depression, a neurogenic bowel is treatable. It can take a lot of work and more than one doctor to get this under control. Don’t give up.

Okay, I get it. My to-do list just got longer. Thanks. But, WTF happened to Jenny???

Being approved for medically assisted dying doesn’t mean you are obligated to follow-through. The Grim Reaper doesn’t show up at your door once you’ve been cleared. Unlike your cell-phone contract, MAID doesn’t own you. In fact, Jenny has 10 years to decide if or when she wants to use it.

Before Jenny could work out the ending to her story, there was a third-act plot twist. I’m happy to report that Jenny isn’t out of the game yet. With the love and support of her friends, she suddenly had an opportunity to have a hematopoietic stem cell transplantation (HSCT) in Mexico. 

Meet Jenny. HSCT requires chemo which means hair loss. This Rapunzel donated her luscious locks last week.

HSCT is highly effective, especially in early and active MS, and if you have MS you should know about it. HSCT is risky, has serious side-effects, can be expensive, and has limited availability; but when it works, it really fucking works. Do your homework and consult trustworthy resources

After more than 20 years with MS and no new MRI activity since 2017, Jenny knows she’s not the ideal HSCT candidate, and calls this her Hail Mary. She’s done her research and understands that the procedure may not halt her smouldering MS, that chemotherapy may worsen neurological function, but Jenny feels like HSCT is her best shot at exorcising what she calls her MS poltergeist. 

Jenny spent much of last year pursuing medical assistance in dying. Now she’s putting all her resources into a chance at a better life. On February 17th Jenny received her stem cell transplant and celebrated what she and other transplant recipients consider her “second birthday”. There was even a cake.

Jenny’s finding a new sense of purpose in speaking her truth and being a voice for others with MS. She’s thoroughly documenting her HSCT journey on a new blog, because she knows the intel can be hard to come by. 

I want to thank Jenny for trusting me to share her story and for being so candid about her experience with MAID. Kathy Reagan Young was the first to break Jenny’s story on the FUMS podcast which I highly recommend. Kathy is a leader in this space and a champion for others with MS. Plus, her generous use of the F-word almost rivals my own. Almost.

You can follow Jenny’s ongoing journey here. And listen to her speak with Kathy on the FUMS podcast here.

Jenny, we are all rooting for you.

Look after yourselves, Trippers. MS is hard.

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PoNS review: good & bad news for a new MS treatment

When’s the last time you heard some truly good news about MS progression?

PoNS review: the good and the gutting news about a new treatment for MS progression

My trial with a new treatment for progressive MS using the PoNS device ended a few weeks ago. I’ve been late writing this review because a) I was busy filming a new tv show, and b) I’ve been waiting for some answers from Helius, the makers of the device. Okay, the delay is mostly because I’ve been waiting to hear from Helius, but get used to me casually mentioning that I have a new show coming that features the bad-assery of the disability community because omg you guys, I have a show.

But first, my PoNS review. 

It’s been a minute, so I’ll remind you that PoNS is a portable neuro-stimulation device that sits on your tongue and tries to rewire your brain when MS has messed with your neural pathways. The hope is that with the magic of neuroplasticity you can retrain your brain to walk and balance better. For more deets check my original post.

And now the PoNS review you’ve been waiting for: a diary of my 99 days in the research study and a sneak peek, anecdotal, unauthorized spoiler of my results before the science–which you should definitely read–gets published.

A woman with MS using the PoNS device and walking with a mobility aid.
Pro tip: Make sure your outfit matches your device.

Day 1

My PoNS journey is being managed by Toronto’s Venn Med Clinic. It’s my first day and I’m feeling hopeful despite myself. I hit “publish” on a blog about the trial before heading out. Helius sees my post right away. (Is PoNS a cult? Am I being watched?) I know this because as soon as I arrive at the clinic I meet Christie, who will be coaching me throughout this journey, and learn that Helius has sent an SOS instructing her to tell me that what I’d said in my blog was wrong. I do not, in fact, get to keep the PoNS device once the study has ended.

Christie: PoNS boss and bearer of bad news.

The rest of my care team includes Maria, a student, and Dr. Demien, who graciously lets everyone call him Daniel, and patiently answers my 1000 Qs, most of which are some version of “Is this really gonna help?”

For the next two weeks, I’ll spend every afternoon at the clinic, doing targeted rehab, after which appointments will drop to weekly and I’ll be required to do an hour of physio a day, on my own, for 12 weeks. This feels like a lot. Sort of. Because, how much can really change in three and a half months? 99 days is basically the lifespan of my mascara (note to self: replace your mascara), and the goal of this trial is to undo two decades of brain damage. And now it’s 98 days because we don’t actually use the device on day one. Day one is all about paperwork and intake evaluations. 

The stats: my 25-foot timed walk takes 14 seconds with my rollator, and 24 seconds with a cane. 

The diagnosis: slow af, but still walking.

Day 2

My first day using the PoNS. The mouthpiece is made of nickel and gold (fancy) and I’m asked if I’m allergic. This feels like a Q that should have been asked weeks ago, since anaphylaxis is kind of a dealbreaker. Fortunately, I’m only allergic to nuts, which I don’t feel too sad about, because nuts might improve heart health but they can’t do anything for my legs. 

The mouthpiece is attached to a hard plastic device that sits around the neck. Rehab sessions are divided into 20 minute intervals which are counted down on a display screen that I can’t see because I don’t have eyes in the back of my head. I recognize that part of the reason PoNS is big bucks is because we’re paying for research and development; so I make another mental note to tell Helius to throw a little more R into the D, as the hard to reach on/off buttons might be tricky for anyone with dexterity issues.

The PoNS device.

When I ask more questions about the mouthpiece, Christie casually mentions that it has to be replaced every three months to the tune of $500. Apparently Health Canada requires electrical devices that go in the mouth to have an expiry date. I probe some more. My electric toothbrush recommends I replace its mouthpiece every three months too, but I’ve been known to test these limits. Couldn’t I do the same with the PoNS? 

No. The answer is no. Whether you use your mouthpiece for ten hours or two thousand, after 99 days, it’s programmed to die.

The PoNS device and its display screen indicating the PoNS mouthpiece will soon expire.
Guys, I don’t know how, but this thing knows what day it is.

I turn on the mouthpiece and it feels vaguely like champagne bubbles on my tongue. I briefly wonder if I could just hack this process with real champagne, since that would be cheaper.

to your health

I’m still getting to know my PoNS (well, my loaner), and I ask if the battery life is similar to the suckitude of my iPhone. Christie throws me another btdubs–the device (the thing that sits around your neck that the mouthpiece plugs into)–has to be replaced every 3 years, when it Inspector Gadget-style self-destructs.

FML. Can PoNS get any more expensive? (Spoiler: It can.)

I try to put my crustiness about the cost aside. I’m introduced to electrically stimulated acupuncture, which proves to be an effective distraction. Electroacupuncture is like regular acupuncture but painful. Ish. It’s more uncomfortable than awful, and anyway, I don’t complain because I’m willing to do whatever it takes to make this shit work. (This shit: my walking.)

Sorry legs, that was mean. I know you’re trying and don’t need any crap from me.

The acupuncture requires access to much of the right side of my exposed body which introduces a new layer of discomfort. I make yet another mental note not to wear period underwear tomorrow. 

Sidebar: electroacupuncture is kind of a bonus of treatment at Venn Med. (I mean, it doesn’t sound like a bonus, because, ouch, but I actually think it helps.) You may not receive electroacupuncture as part of your PoNS therapy. Then again, you could seek treatment with electroacupuncture independent of PoNS therapy, but that’s a post for another day.

Day 3

I wear a shirt dress that barely covers my bum because it feels like the easiest way to provide lower body acupuncture access. It’s not like Venn Med is giving out paper gowns. The room gets the full show and in hindsight, I should have worn shorts but I don’t own any. I have no bum and I’m always bloated. I don’t do shorts. 

Christie tells me she sees encouraging signs, but I don’t know. I’ve been to rehab before. I feel like cheerleading is what these guys are trained to do. 

Later that night, I start to say, “I knew I would be tired, but I didn’t think I would be this tired”, as I full-on fall to the ground. The Banker offers to help me up, but I ask him to just let me lay there for a while.

Day 4

I have more electro-stabupressure and do exercises I can only describe as Tummy Time. Relearning to walk can feel infantilizing.

Unlike past experiences with physio, the majority of the work we’re doing is extremely localized. I practice balance exercises, but the bulk of my rehab is hyper-focused on the areas that are the most impacted. We work the right leg almost exclusively.

Day 5

I’m asked to crawl on all fours, on a table, in my denim mini skirt. (Technically, nobody asked for the denim mini.) When Christie wonders if she can film me, I say no, and she doesn’t seem surprised, confirming how obscene I look. 

It’s only my fourth day using PoNS, but we do some tests to look for improvements and there aren’t any that feel meaningful. I’ve spent hours on a table just trying to bring my knee up towards my chest. It’s hard to get excited about the possibility that my lazy right foot is (maybe?) everting a few degrees more.

I feel disappointed and anxious, like, something should have improved by now. Otherwise why else are they testing?

Day 6

It’s Saturday–my first day off—and I wake up in a mood. My PoNS device is spending the weekend at the clinic and I don’t miss it. I have a headache. I’m exhausted. It’s a beautiful sunny day, but I’m too wrecked to leave my apartment. I spend the day contemplating how hard it is to have a disease that pretty much promises to get worse. I blame hope for setting me up like this. And yet, I know I still have to keep trying.

Day 7

2:52 a.m. I wake up in the middle of the night (as one does) and pull my knee towards my chest without thinking. It feels easy. I decide to try it again, telling myself that if I can do it one more time I will no longer want to die.

While The Banker sleeps next to me I do it 9 more times.

Suddenly, I’m a believer.

Day 8

At the clinic I can only manage a few partial knee bends with Christie, which is more than I could do last week but it feels crushing after what I did after dark. I start to wonder if I only dreamt those nocturnal knee bends.

Later, I will realize that re-learning to walk isn’t like the movies. It isn’t linear.

This is hard. Mentally, physically, emotionally.

Day 10

It’s the last day of the phase of my PoNS trial that involves daily afternoons of physio. I wake up singing ‘I don’t wanna go to rehab’, but without the singing. I can only do one knee bend in bed and wonder if I would have had this much ‘improvement’ if I’d done two weeks of rehab at this intensity without the PoNS device.

But then I do 10 knee bends in the clinic. Fast. I have witnesses to keep my brain from gaslighting itself. There’s cheering. Maria says she feels like a proud mom, even tho she’s young enough that she’s never seen When Harry Met Sally. Neither she nor Christie have even heard of Nora Ephron and it’s a good thing I didn’t know this before I put my trust in them. 

It’s a massive win and the motivation I need to keep going.

Day 12

I sleep for 10 hours and still need an afternoon nap. Is all this neuroplasticity making me sleepier? It feels weird to be congratulated for sleeping 10 hours, but I don’t know. Sometimes Fitbit just gets me.

I sure did.

Day 14

I wake up motivated and do 40 minutes of training before I have my coffee. I reward myself with a biscotti and an Americano and quickly learn that my taste buds need time to recover. PoNS kind of numbs them, and it takes a beat to be able to taste again.

Day 19

I show up to physio in vintage 1990’s Adidas tearaway pants, having finally figured out what to wear to maintain my dignity while getting semi-clothed acupuncture, assuming dignity looks like a middle-aged woman dressing for a 90’s rave. (It doesn’t.)

Day 25

Am I getting better at walking after wine? Not like, better, better, but kinda?

Day 49

I test my 25-foot timed walk at home and I’m down to 7.49 seconds. I do it in 9.6 seconds with my cane.

Day 58

Fitbit tells me I took more steps today than I have in 3.5 years. I walked home from dinner on a patio in my hood, where I had two glasses of Chardonnay. I am getting better at walking after wine.

Day 65

I’ve been religiously tracking my daily walks around the block since the trial began. Today I clock 17 minutes, which two months ago would have been impressive. Now it feels slow, except I did it without my Dictus. I’m starting to say “I can’t believe it” a lot.

Day 77

Day 89

It’s my penultimate appointment and we’re supposed to be celebrating my gains, but Christie is charged with yet again telling me that at the end of the year the cost of PoNS will be doubling to ten thousand dollars and the mouthpiece will jump from $500 to $2500 every three months. Is this a PoNS scheme? Like a savvy drug dealer, the first three months are free and once you’re hooked on that sweet, sweet, walking high, they own you?

Christie does some retesting that confirms what we both know: I am stronger and faster:

A graph showing improvement in walking speed after using PoNS for MS.

From the safety of my apartment, I’ve started to practice walking without any aids. Drop-foot means my right foot still needs to slide, but I’m able to stay on my feet, unsupported, in intervals of 20 minutes without breaks. I’m prepping meals without needing a chair. I feel safer getting in and out of the murder-tub. Don’t tell The Banker, but I could probably start doing the laundry again.

A graph showing improved walking speed using PoNS for progressive MS.

I’ve been watching my body get slower and slower for years. My go-to proposition to the dark arts mostly consists of pleading for things to just stay the same. I’ll be good. Just don’t let me get worse and you can have my first born baby. You can have all my babies. You can have my Prada sunglasses and all my Sephora points. I’ll even stop swearing if you just let me stay the same. I don’t ask for improvement, because even in a deal with the devil, improvement seems like too much to ask; too much to hope for.

PoNS review: can PoNS help MS progression?

If you don’t have MS, you might be wondering what’s the BFD? I still walk with a walker and pee with a catheter. I still very-fucking-much have MS. But if you have MS too, well, I don’t have to explain these results. For the first time in forever, my MS is changing for the better, with the intervention of a device whose only side-effect is that my hair occasionally gets caught in the hard plastic neckband.

So I ask myself, if this is what’s possible in 99 days, what’s possible in the next 99? And the 99 after that? What is possible for the future of my MS?

What are you saying? PoNS improves MS?

More research needs to be done. We all know that everyone’s MS is different. PoNS isn’t about overnight miracles; there’s hard work involved and PoNS isn’t going to do it for you. But there’s reason enough for me to believe PoNS has contributed substantially to my improving mobility.

If you want to know how to get your hands on your own PoNS device you’ll have to do some googling. I’ve reached out to Helius with a number of Qs, but the PoNS pusher who first contacted me—a guy who genuinely seems to care about people with MS—sadly, no longer works for Helius, and my line of communication has been cut off.

Helius has every right to make as much money as they can from their product (yay, capitalism). But, PoNS can change the lives of a few people or it can change the lives of many. While PoNS waits to qualify for the medical device status it deserves, people with progressive MS will continue to wrack up disability. We don’t have the luxury of time on our side. 

While I feel very lucky to have participated in this research, as trial participants, we’ve invested considerable time, effort, leaps of faith and the significant cost of intensive physio–investments that will contribute to the eventual approval of PoNS as a medical device. 

Helius, you’re not taking my calls, but I know you’re reading this. Please do the right thing and make PoNS available to more people with MS. I urge you to allow your study participants to keep their devices once the data has been collected (a gesture which costs you nothing), and to reconsider your extraordinary cost increase.

I’d love to hear from other PoNS users. Some of you have reached out privately, but if you’re comfortable sharing in the comments, I know others will benefit from your perspective. 

I’ve been without PoNS for a couple of weeks now, but I’m not willing to plateau. I set fire to my credit card and invested in the device and a stockpile of as many mouthpieces as I could manage before prices go up at the end of the year. I’ll start PoNSing again, when my new device arrives, and I promise to keep you posted.

A woman with progressive MS wears a PoNS device around her neck.

Keep moving, Trippers. There’s hope on the horizon.

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What’s The Big Deal About Coming Out With MS?

Is MS your sick little secret?

What’s The Big Deal About Coming Out With MS?

One night, years ago, The Banker and I were out for drinks with some new colleagues of mine. Between antipasto and mouthfuls of montepulciano, the conversation turned to trading tales of lowkey medical trauma, like the time my high-school boyfriend accidentally ice-skated over my finger. You know, the horrifying stories of slamming your hand in a car door, or punching yourself in the face as you attempt to put on a bra; anything involving crazy-glue, a crème brûlée torch, or a mandolin, really.  

Not one to let a gross story go to waste, The Banker started sharing his own cringe-worthy anecdote–well, our cringe-worthy anecdote–about the time we were in a Montreal hotel room when my DMT’s auto-injector jammed. While The Banker tried to solve the problem, the device suddenly sprung back to life, catapulting the syringe full of potent medication into the air before landing it dramatically in the centre of TB’s bare-footed big toe.  

Of course, TB never got to share the climax of this harrowing tale. Almost as soon as he started talking, he panicked and went pale as he realized he was outing my MS. His attempt to bail on the story only made things worse as his sketchy plot holes made it sound more like a heroin experiment than however he thought he was spinning it. I should have re-directed the convo by outing his third nipple, but I respect boundaries and that’s his story to tell. Instead, I jumped in and confessed the truth: actually, I have MS.

Wait, what? Who doesn’t know you have MS?

When I was first diagnosed, I never thought people would treat me differently because of it. I was open about my MS. 

I also used to think mermaids were real and that vodka won’t give you a hangover. I was wrong on all counts. I quickly learned that people do act differently when they learn you have a chronic illness like MS. Not always, but enough to make me wary. And eventually, the pressure to prove my invisible illness, the dismay of being treated like damaged goods, and the fear of being left out or left behind, led me to start keeping my MS classified.  

My improv troupe. Not one of them knew about my MS.

Passing as non-disabled

There was something intoxicating about passing. Staying silent meant I could be Ardra, instead of Ardra-with-MS. But it was an imperfect solution. Keeping secrets is stressful, and MS will try to reveal itself in ways that those of us who live with it don’t always recognize are our ‘tells’. I’ve been asked about my fancy walk, and why my fonts are so big you can see them from space. 

I remember the lunch with a new friend, when I was just learning to self-catheterize and had spent an unexplainable 45 minutes in the bathroom. I remember stumbling into an audition, certain the panel thought I was drunk. I remember the European choir tour (where, like everyone, I actually was drunk) but the amount of rest I required led to rumours I was pregnant. 

I was more comfortable being thought rude and reckless than sick and disabled.

Not pregnant. Just need to sit. Again.

Coming out with MS

Coming out and passing are terms we associate with the LGBTQIA community. The disability community is marginalized in different ways, but members of both groups have felt the need to hide an identity over which they have no control. Both communities fear how disclosure could impact  careers, relationships, and safety. Both communities risk being isolated, stigmatized, and seen as less-than. Just like homophobia, ableism exists. 

If you haven’t watched Netflix’s Special do it now. I mean, finish reading this, and then watch, obvi. Ryan O’Connell’s character (adapted from his real life) is a proud gay man who allowed his new coworkers to believe he’d been hit by a car, knowing it was a more palatable explanation for his own fancy walk and unexplained behaviours than coming out with the full truth, that he has Cerebral Palsy.

A recent study shows that for many with MS, the ‘should I/shouldn’t I’ decision can be serious enough to cause anxiety and depression. It’s not enough to be told that the world will understand and that the law is on our side. Because, is the law really on our side when there are systems in place that keep disabled bodies out of sight? When inaccessibility is standard, medications and medical equipment aren’t affordable, and people with disabilities regularly have to fight for benefits?

Coming out with MS can be scary

It can be terrifying to tell someone in a position of power or influence over your life, or even someone whose opinion matters to you, that you have MS, when it’s still acceptable to say, think, and believe that able bodies are better than disabled bodies. To be clear: 

Able bodies are better than disabled bodies is still something you can say out loud and not get canceled. You might even believe it yourself. 

It’s equally acceptable to react with horror at disability; and if you think I’m being dramatic, let me remind you of Tiktok’s viral new teacher challenge where parents–PARENTS–used photos of people with disabilities to scare their children.

The cost of keeping quiet

And so we hide our MS, like it’s something to be ashamed of, from the people we depend on for survival. Who wouldn’t want to keep this shit on the downlow? Sure, passing has it’s perks, but that doesn’t mean it isn’t hurting you, or the rest of the world for that matter. The obvious cost of keeping quiet is that we are left to fend for ourselves, without necessary accommodations. This can lead to frustration, fatigue, and a reduced ability to perform the tasks of daily living. And keeping quiet can have other consequences too. 

Eventually, keeping MS my sick little secret felt gross, like a betrayal of myself. 

When we don’t feel safe enough to disclose our MS, we end up reinforcing a damaging message to ourselves that we have something shameful to hide. Even the language around sharing a diagnosis as something that needs to be disclosed suggests there’s something sneaky going on; something that needs confessing.

I see you looking.

Worse still, we are never free to truly be ourselves. Our sense of self-worth becomes dependent upon maintaining a lie. When we say that’s not me, I’m not one of those people, we perpetuate the stigma around chronic illness. We let the status quo go unquestioned, and we send ourselves the dangerous message that disability is a choice one can simply opt out of. 

Humans have a need to fit in, and the desire to be included is powerful. But disability is the largest minority in the world. And yet, we haven’t found safety in numbers, let alone pride in identity. So many people live in fear of being found out and seen as damaged, broken, sick, less-than. Disability IS normal. If we can’t raise a hand and say this is me, this is what MS looks like, then we can do nothing to undo the myth that we are different, strange, less-than, other.

Me, after climbing 1000 steps in 2014. This is also what MS looks like.

So, you’re telling me I should always be open about my MS?

Hell no. You don’t have to tell everyone, or anyone about your MS. Even with a gait that gives me away and an openly MS internet presence, I still find plenty of opportunities to deny nosy randos access to this kind of intel. Not because I’m ashamed to have MS (I’m not), but because I’ve decided it’s not in my best interest. I don’t owe anyone an explanation for how I move through the world. And neither do you. 

Coming out with MS in a positive, empowered way takes practice. It’s hard to acknowledge membership in a group that literally no one wants to be a part of. It’s hard to claim status in a society that has a hierarchy of bodies that values productivity and so-called perfection above all else, but asserting our right to be meaningfully included is exactly what we need to do. 

In a more progressive world, where disability is no longer misunderstood, stigmatized, and seen as a liability, people with MS would feel safer sharing their health status. Until then, we can’t advocate for our needs or dismantle stigma and ableism without being open, vocal, loud, and proud.

Nobody said progress was easy.

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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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Why I’m Not Freaking Out About The Apocalypse

COVID-19 and MS

If you know me at all, you’re probably assuming that COVID-19 has me camped out in a bunker somewhere in rural Ontario, wearing a Hazmat suit, and holding a shot-gun to protect my lifetime supply of Miss Vickie’s chips while I ride out the apocalypse. After all, I have MS, which puts me closer to the top of the deadly virus’ enemies list, right?

Actually, I’m at home in Toronto, still in my pyjamas. My doomsday stash includes nothing more than an extra month’s supply of catheters, and none-of-your-business bottles of wine. Technically, I’m isolated, but that’s nothing new; and anyway, it’s only for a few hours, because I’m going out for dinner with friends tonight, and before you clutch your pearls in horror at my extreme risk taking, here’s how I feel about it:

As someone living with MS, the consequences of any infection can lead to actual relapses that can cause real, and possibly permanent, damage. Add to that years of immuno-modulating medications, and I am always on high alert.

Every. Single. Day.

So, how come I’m not wigging out now?

This is my normal.

My tolerance for worst-case-scenario daymares is admittedly pretty high. Been there, done that. But in some ways I actually feel safer now, because people are finally washing their damn hands and staying home when they have a sniffle. In other ways, I feel like maybe, just maybe, people are getting a taste of what it feels like to live with the kind of anxiety that comes with a serious health threat. 

The world’s reaction

It’s interesting to see what’s possible when the health of—let’s face it— the people we value most, is threatened. In Canada, the government has eliminated the one-week waiting period for EI benefits for workers who are quarantined. Employers are figuring out how much work can actually be done from home. Concessions that were deemed impossible for people with disabilities have suddenly become options for the general population. Hmm.

Meanwhile, the public is being constantly reassured that this virus is really only taking out the elderly and those with underlying conditions. Let’s be clear: this is a not-so-subtle nod to the belief that those lives are less valuable anyway. And PS, we can hear you. 

If you find yourself struggling with the social impact that comes with self-isolating, consider the loneliness, frustration, fear, and straight-up lack of access that many people with chronic illnesses deal with on the regular.

What will we learn from COVID-19?

When the dust settles, I hope we are changed from a culture that prioritizes work and showing up above all else, to one that embraces wellness and considers the safety and well-being of everyone. If we no longer reward people for going to work when they’re sick, but support them in their recovery, everyone wins. 

Stay safe and look out for each other. These are strange and unfamiliar times. Let us be grateful for Netflix and liquor store deliveries. Amen.

We will get through this.

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Ever wondered if you have other diseases?

Recently, Tripping On Air was recognized as a Top MS Blog by Healthlabs and that was super nice of them, but it’s good news for you guys too because, they’re giving TOA readers 10 FREE Comprehensive Health Test panels, where you can find out cool things like, your blood type or whether or not you have anemia. Non-Trippers shell out a whopping 99 bucks for this kinda intel. 

Cool. But, is there a catch? You have to be American. 

What? That’s not fair! Relax, hosers. Canada already gets this for free. 

So, if you’re in America and you wanna find out about your lipids and your liver function, call 1-800-579-3914 and ask for your free comprehensive health test panel. You don’t need a doctor’s referral, you just need to name drop Tripping On Air. They will hook you up with a lab nearby where you can provide your blood sample. You’ll get results by email a day or two later. If you’re one of the lucky 10, lemme know how you made out. Don’t like, tell me how your kidneys are functioning – that’s confidential. But I’d love to hear how their service was. 

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Ten Reasons Why Chronic Illness Is One Big, Stupid, Joke

Lisa Walters of Damsel in a Dress, asked me to write a guest post for her popular blog about life with Lupus. Before she received her dx, doctors thought she might have MS. There’s a lot of overlap in the chronic illness community, and if you like Tripping on Air, I know you’ll love Damsel in a Dress

You can check out the post here

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The Importance of Pretty: Beauty and MS

Lisa Dryer and Tori Davies-Wompey are on a mission to bring beauty back to women with multiple sclerosis. Not that it went anywhere. It’s just been hiding. 

From the moment of diagnosis, people with MS learn about what they stand to lose. The list of physical symptoms is too long and too depressing to detail here, and anyway, lots has already been written about this.

What the pamphlets and WebMD don’t tell you, is how this disease can erode your self-perception, your self-image. MS can be a straight-up, joy-sucking Dementor, and vain as this might sound to those who’ve never had to think about it, MS can steal your beauty.    

Wait, what? MS can wreck your pretty?

MS takes and takes, and while it can’t actually turn you into a human gargoyle, it can make you think you’re one, and that’s just as bad. Tori Davies-Wompey, one of the women behind #MSbeautiful, says “I think MS steals so much from us. Our jobs, our abilities, our roles as daughters, wives, mothers, whatever it was that you did before that you can’t do now”. That’s a heavy list. But why stop there? Maybe you’ve had to give up heels. Maybe you’re covered in injection welts and bruises, maybe steroids have taken over your face. 

Maybe you’ve peed your pants

Any one of these things can make it hard to recognize your inner goddess let alone celebrate her. 

Founder, Lisa Dryer was mid-relapse and struggling with these issues when she knew something had to change. With the help and encouragement of professional photographer and close friend, Al Murin,  #MSbeautiful was born.

Cool hashtag, but what exactly is #MSbeautiful?

#MSbeautiful is an event that brings women together for a no-cost day of pampering and glamour, complete with hair, make-up, and even swag bags. The events are an opportunity for women to support each other, reclaim themselves, and raise self-esteem. Each event culminates in a professional photo-shoot. They’ve already held successful events in Ohio, Texas, and Wisconsin, with Colorado on deck. Lisa’s goal is to be in every state and here’s hoping that eventually #MSbeautiful extends past the US border.  

So, Lisa and Tori have MS? Why are they doing this?

Lisa and Tori seem to know that in helping others we help ourselves and when Al Murin passed away unexpectedly last year, Lisa became passionate about continuing the mission they had started together. Tori says her work with #MSbeautiful is rewarding, that it gives her a sense of purpose. Says Lisa, “Looking at happy people makes me happier…But making people happy is even better. Giving people a little bit of fairy tale in their day. Amazing.”

Ok, but like, does lipstick cure MS?

If this superficial need to feel pretty is beneath you, then congratulations, you’re better than me. And if you’re pretty without makeup, well, bless your heart. Go forth and multiply. Personally, I believe more in blow-outs and bronzer than in actual, natural beauty, but Lisa (she really is better than me), believes everyone is inherently beautiful; that the things that make us beautiful extend beyond the surface and include “creativity, talent, smarts…what make you you”. She isn’t afraid to go on camera looking undone. She says women need to see that side of it too. It’s not about being an idealized version of yourself. It’s about how you feel. 

Knowing a bit of glam can’t fix broken self-esteem, let alone cure MS, Lisa’s vision is to provide at least one amazing day, where we can escape a bit. And it’s working. Tori says “feeling pretty…makes me feel just a little bit human again”. Are we seriously gonna deny her her humanity? Get this girl to a MAC counter. 


Wait. Are you saying disability can be beautiful?

One #MSbeautiful participant had this to say “As a woman with Multiple Sclerosis, it is very rare to feel beautiful, or as the center of attention for the way that I look. I am no stranger to getting stared at. Generally, I try to ignore people who look at my walking device, such as my walker or cane.”

Lisa and Tori know this is bullshit. Society has told us a bunch of lies about disability. In a disease where one has little control, claiming one’s beauty is about taking control back. #MSbeautiful is about being empowered to say: 

I’m worth this. I deserve to be here. I deserve to be seen.  

Are Lisa and Tori #changing the world?

Positive examples of disability in media are few and far between. Disability is underrepresented, misrepresented or just plain ignored and women with chronic illnesses like MS are left to conclude that disability, visible or invisible, isn’t part of the conversation, isn’t relevant. Simply put, isn’t beautiful. Lisa and Tori are calling this out and replacing the void with awesome images of real women in all stages of MS.  

When Tori talks about how using a walker, and sometimes wheelchair, messed with her idea of herself, it clicks for me. Tori’s a babe. Tori uses walkers and wheelchairs. Me too. If Tori can be kick-ass, it reminds me that, so can I. 

Seeing her beauty helps me see mine 

and I realize just how powerful this campaign is. When women are empowered, it’s contagious. We need to see ourselves reflected back.

Swag bags and paparazzi? I want in.

These ladies want you to know that disability does not disqualify you from being beautiful. Join the #MSbeautiful Facebook group. Start using the hashtag on your selfies. If you want to participate in an event in your town, look for info on their FB page. 

Hold up. I’m a dude. Can I come too?

No. #MSbeautiful is about women empowering women in a safe space. And while we know you need to feel pretty too, we’re sure you understand. Men are also affected by MS and many have faced similar issues, but this particular project is just for the ladies. So, sorry guys. You’ll have to get your own thing. Might I suggest #MSdudeiful?

Until next time, stay pretty, Trippers.

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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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What I’m Reading

A couple of weeks ago I received a package in the mail. Fellow writer and Tripper Jennifer Evans, had sent me a collection of poems she had compiled, penned by MS’ers about their experiences, called Touching MS, Poetic Expressions.

My first thought was delight; how nice to have received such a thoughtful gift from a stranger.

My second thought was Oh God, amateur disease-poetry. This is going to be terrible.

I poured myself a big glass of wine and decided to give it a peek, because these are my people. To my surprise I ended up reading the whole collection in one sitting, cover to cover. It’s not all Tennyson but some of what I read rang so true to my own experience that I easily could have signed my name to it. (I mean, not enough swearing to convince you I’d actually written any of it, but that is why I don’t write poetry, bitches). 


Don’t be fooled by the flowery cover. There’s nothing sugar-coated about what’s inside. At times hopeful and at times raw, it will remind you that you are not alone.

Like this one from Marie Kane:

Unsinged
Marie Kane

Charcoal fire lights our patio bricks. You turn the steak,
     reveal crosshatch pattern of the grill.
I sit above you on the porch; we are silent as we often are.
     Perhaps you regret serving steak, which you have to cook
and slice, and regret having to clean up this dinner
     with its vegetables and rice, and even rue the decision

to marry me now that I am crippled, not able to do
     as I used to – 
anything, really – and you are so quiet I want to
     make as much
uproar as I can, rail against you for being so
     confoundingly stoic,
You finish grilling, climb the porch stairs, kiss my shoulder,
     and enter the kitchen. I follow, my cane catching the metal
strip at the entrance. I grab the door jamb to keep
     from falling.

“Are you OK?” you ask. There is nothing in the world that
     could make me tell you the truth. You      remove the red 
cowhide grill gloves, fill the white plate with asparagus 
     and rice,
thinly slice the London broil, reserve the most tender for me,
     and with the same steady hands, help me into my chair,
guide it to the most suitable position at the table, present
     my plate,

and light the candles. We eat by their faint glow, and 
     my most
secret self responds to your generosity with embarrassed
     compliments about the food. Later, I watch you sleep,
scent of the grill in your hair, while your hands – 
     unsinged, wide, loose on my breast – 
claim me this night as your own.

Originally published on multiplesclerosisnewstoday

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