Why I Really Hate The C-Word: Caregiver

that will be $100, please

Why I hate the C-word: Caregiver

Last week The Banker and I were enjoying Martini Monday, catching each other up on our respective work days when he casually recounted a conversation he’d had with one of his banking bros in which he referred to himself as my caregiver, and let’s just say it’s a good thing I had a bit of a buzz on.

While you were at work I refilled the Brita and made ordered your dinner. Who’s caring for who, mother-fucker?

Until last week, the C-word is not a word I had ever heard The Banker say. At least not as it pertains to me. And I was not impressed. Not impressed at all.

You know when someone casually starts using a word you’re sure they’ve never used before? Like, in 20 years you’ve never heard them say hegemony. Or, propitious. Suddenly they’re using it all the time. Nice try, poseur, you’re not even saying it right. What kind of chat room taught you this fancy foreign vocab?

The Banker and I have a list of ‘Things You Can’t Say’ in our home. Okay, it’s more like I have a list of things he can’t say. It includes intrusive questions like, “How did you sleep?” (I didn’t), “What time do you want to get up?” (I do not get up at “times”), and “Do you want me to add Miss Vickies to the grocery list?” (don’t make me say it, the answer is always yes). We haven’t had the don’t say the C-word convo because until last week, I didn’t think we needed to.

I hate the word caregiver.

Before I tell you why I hate the C-word (and apologies to C-word seekers who were driven here by the SEO looking for something completely different), let’s just clear up exactly what a ‘caregiver’ is. While urbandictionary is my go-to resource for unsavory word definitions, none of their interpretations are appropriate for even this mouthy blog (tho they do have a spicy perspective on the caregiving role). Merriam-Webster, however, defines a caregiver as, “a person who provides direct care (as for children, elderly people, or the chronically ill).” Merriam-Webster goes on to explain that, “the care of a patient with Alzheimer’s Disease or a related disorder can be a physical, emotional and financial drain on the family caregiver.

And here’s the first hint at why I hate the C-word. According to shitty Merriam-Webster, being a burden is baked into the very definition of ‘caregiver’.

With the right lawyer, The Banker might actually be able to claim the moniker ‘caregiver’. I do have a chronic illness, and I guess ‘direct care’ could include things like helping me into this Shrek boot at bedtime.

Pro tip: if you’re worried about foot inversion and/or sores on your heels, this boner-killing bedroom attire by Posey is 5 stars.

But caring exists on a spectrum, especially when it comes to a disease as variable as MS. The Banker does all the dishes, every dog-walk, and all the driving. I don’t want to diminish how much he cares for me, but is this enough caring for him to qualify as a capital C Caregiver? Because, when it comes to managing my MS, it takes a village of medical professionals and social supports; and while I appreciate that TB puts the rollator in the trunk of the car 100% of the time, I feed and dress myself, I manage my appointments, and make all my own medical decisions. I make all my own every decisions. Yes, he does a lot for me, but it’s worth reminding myself that:

the person who is responsible for the overwhelming majority of my MS care is me.

President and CEO

Am I being extra? Sure. You know my brand. But words matter, and the language we use impacts how we feel. Maybe I’m reactive to the C-word because most of the time I’m trying hard not to feel like the B-word, burden. (And if you need a reminder on the MS F-word, click here.)

Yeah, but isn’t a rose by any other name still a caregiver?  

I don’t introduce The Banker as my lover, because it’s not the 70s and ‘lover’ is a gross word. More than that, our sex-life is part of our relationship but it isn’t what defines it. Even the term ‘husband’ has evolved since the 1950’s. The Banker is my partner, even if I need him to get the chips off the high shelf and fold all my sweaters. How can we feel like equals if we label ourselves by anything else? Using the word ‘caregiver’ would define our relationship by MS, and make MS the Most Important Thing. I feel best about the role MS plays in our marriage when I think of us handling it as we would any crisis: as a team.

And anyway, using the C-word is bad for both of us. There’s a helplessness, and a parent/child dynamic that’s associated with this term. It creates an unsexy vibe (unless you’re into that, in which case, I refer you back to urbandictionary). What’s more, ‘caregivers’ can become overwhelmed with an exaggerated sense of responsibility. Yes, life is easier when The Banker mixes my martinis or preps my two-a-day hot water bottle habit, but I like to remind him of the Trippers I know who have more advanced MS than me, and are nonetheless living and thriving without the benefit of an unpaid caregiver. I stress this because I need TB to know—I need us both to know—that I am here in this relationship because I choose to be, not because I have to be.

It’s true, I wear a lot of blankets (pretty sure this pic is from July). I may look like a shivering consumptive half the time, but I’m not as delicate as I seem.

So, is there ever a time when you can use the C-word? 

Before I finished my cocktail, The Banker backed up his claim to martyrdom by giving me the full context of his foul language. He had been trying to communicate his limited risk-tolerance for Covid exposure, explaining that he is the “caregiver of someone who is high-risk.” My lawyer would argue that he could have just said, “My wife is high-risk.” After all, parents, partners, and friends are already relationships that include an element of caring, of keeping safe. But I decided to let it slide. It was his first offense and it’s worth considering that, ‘caregiver’ and ‘high-risk’ are words we’ve commonly heard in the same breath over the past couple of years. Plus, he didn’t object. He understood how the word sounded in my ear and that my lawyer is a better lawyer than his lawyer.

It’s me. My lawyer is me.

Rejecting the label of caregiver doesn’t mean a rejection of care. My beef is with feeling diminished by how the term puts the balance of caring squarely on one side of the relationship; dismissing whatever care I provide, making me sound like a dependent. I concede that there may come a tipping point when, someday, I need considerably more care. But using the term ‘caregiver’ before we’re even close to that point feels like a rush toward a dynamic neither of us wants. 

So, if I can’t say the C-word, wtf can I say?

The people in our lives who love and care for us don’t always seek or know where to find their own support. In this case, the term caregiver can be helpful in identifying resources and connections with others who can relate. And, if using the term caregiver will net you a sweet tax break, then sure. Cut me in on the deal, just do it when I’m not around, so I don’t have to hear you say the C-word out loud.

And obviously, you do you. If the caregiver label helps you feel cared for, or if someone in your life needs the acknowledgement or recognition the word confers and you’re cool with that, you don’t need to listen to me. These are the details that get negotiated in relationships and it’s none of my beeswax how you define yours.

This rant is for anyone who feels icky about the idea of their spouse as a caregiver, but maybe isn’t sure why, or how to articulate their discomfort. This rant is the half-truth I need to tell myself so that I can still feel like me, when year after year I need more and more care. This rant is the reminder that I’m still in the game. I need you on my team. But, I’m still the captain.

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That Feeling When You Get Bad News About Your MRI

An antique style phone made of peach marble with gold details. It's so pretty you'd think it would make hearing about new lesions on your MRI easier to accept.
new lesion, who dis?

Disclaimer: I will be fine. I just need to be dramatic about it first. 

That Feeling When You Get Bad News About Your MRI

This morning my neurologist called with the results of my recent MRI to drop this bombshell: “There is a large new intramedullary lesion within the left lateral medulla.”

Okay, fine. Nobody talks like that. 

What she actually said was that I have a new lesion on the part of my brain that affects speech and swallowing. The quote above is from my MRI report. Add intramedullary to the list of words I wish I didn’t know. (I was not good at biology, obvi.) 

Over the past few months I’ve had the alarming experience of losing my voice, struggling to speak, and occasionally gagging on water. I suspected this was MS, but for some reason (fucking brain damage or good old denial?), I didn’t actually realize I was having an attack. I’ve been in the MS game for 19 years now, but it’s been a minute since I’ve had a real relapse. My shiny new intramedullary lesion (am I saying that right?) was scientific confirmation that the beast is waking up, and the news landed like a gut-punch. 

Instead of taking this in stride, I burst into tears, like a rookie. New lesions aren’t supposed to happen to me. I had Lemtrada! What gives? Am I letting the stress of Covid get to me? Am I eating too much Miss Vickies? Not getting enough sleep? Drinking too much? Hanging out with the wrong crowd? I swear to God I’m flossing. Wait. Is this because of all the swearing?


My tears this morning weren’t just tears of grief or frustration. My tears today were white hot tears of rage. In the years between my last Lemtrada infusion (2016) and now, I had been dismissed as having unmodifiable disease with no option for treatment despite worsening symptoms. Go home and hope for the best, but like, plan for the worst, cause this shit isn’t getting any better. I was effectively getting dumped by my doc.

Thank you, next.

I will not be Pete Davidsoned. And I will not throw my hands up in defeat. It was not easy or fast, but I finally found a new neuro who was not willing to give up on me and who believes Ocrevus is my best option. But months of insurance delays and Covid-caution postponed my access to treatment even longer. Knowing that if only I had been on this drug six months earlier I might have never needed to think about my medulla and how it might try to take my voice and choke me out is a frustration that is difficult to articulate. Like, I really need to speak to a manager. I demand a refund and a lifetime supply of whatever it is you sell, because:


Work will begin with a speech pathologist to protect and rehabilitate my speaking voice. I will spend my precious energy learning things like safe swallowing techniques and I don’t even know what the fuck else. It’s hard to feel like you’re enriching your life when you have to spend so much of it just trying to catch up; chasing the simple abilities you once took for granted. 

All this to say, be a squeaky wheel. MS is not like many other diseases that have obvious consensus-based treatment plans. No two cases are alike, and doctors have vastly different opinions on how to treat the disease, despite the fact that research tells us early and effective intervention is key. If only I’d had treatment x a little earlier is a heart-breaking path I’ve been on all too often. If you feel like your doctor is willing to gamble with your future, find a new doctor. It’s not good enough to react to MS. We must prevent attacks from happening at all. 

End rant. Thanks for listening, Trippers.

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What You Need To Know About Toxic Targeting And MS

*A version of this post first appeared on Aby, the app for people living with MS.

What is toxic targeting?

Toxic targeting is the offering of unsolicited advice in an attempt to influence a person regarding their disease-management, and if you have MS, you already know how common it is to hear about how kale and wishful thinking will solve all your problems. Toxic targeting is the oversimplification of a serious medical problem by means of unwelcome, often aggressive, and/or uninformed advice. Toxic targeting is a micro-aggression because it’s usually the result of good or neutral intentions.

Thank you! I’m pretty sure these cause liver failure, but it’s cool ’cause. You meant well.

From the moment you’re diagnosed with a chronic illness like MS, you become the focus of an overwhelming amount of advice from friends, family, even strangers. People with MS are regularly counselled to be positive, to eliminate certain foods, to try a range of diets, drugs, and supplements, even to seek experimental procedures in foreign countries. 

Why does toxic targeting suck?

Regardless of intent, the phenomenal amount of advice that comes with an MS diagnosis can be considered toxic because of the negative impact it has on the people receiving it. 

Repeatedly being told what to do and how to manage your body is annoying. It’s also dangerous. Most of all, it’s nobody else’s business. MS is a complex and difficult disease. When information is ripped from headlines or shared via third-hand anecdote, it’s often inaccurate. Even when data is reliable, it may not be relevant. Everyone’s MS is different. 

When I get advice that suggests there’s a simple solution (give up gluten!), the implication is that I’m not doing everything I can to deal with my MS; that maybe MS is my fault. The implication is that my doctor’s not that smart, or that maybe MS isn’t that bad (we all get tired). 

When we are, again and again, encouraged not to let this disease change us, and to just think positively, not only are we denied a bit of room to grieve and process our loss, there’s a feeling that if our will is strong enough we’ll avoid getting sicker. If we eventually do need mobility aids, we’re afraid we’ll be judged for having given up, for not having tried hard enough. We may even feel we’re letting others down.  

When we’re asked if we’ve tried different diets, supplements, or medications, we’re, in effect, being asked to disclose personal details about our choices. Sometimes we feel we must defend what we and our doctors have decided to do. Expecting someone with a chronic illness like MS to prove just how sick they are is invalidating and emotionally exhausting. 

What can you do about toxic targeting?

Recognizing that most people just want to help, and accepting that you can’t control how others act, can sometimes be enough to let you smile politely and say, “Thanks for thinking of me. My doctor and I have a plan”.  

It takes practice to handle toxic targeting with grace, in a way that lets you leave encounters without resentment. It’s okay to say, “Actually, I get this kind of advice all the time, and it’s really exhausting.” Thank them for their concern, and if the advice is coming from someone who truly wants to support you, consider letting them know exactly what that might look like. “Thanks for caring. What I really need help with is walking the dog, and picking up groceries.” And if you really want to shut them up, “Do you want to clean my bathroom?”.

If you insist on offering me something toxic, I’ll have a martini. Hendrick’s. Extra dry.

Toxic targeting is common on social media, especially in drug and diet groups; where, unfortunately, people from within the MS community sometimes forget that just as everyone’s MS is different, so is everyone’s response to interventions—what worked for them may not (will not) work for everyone. Avoiding toxic targeting online means ignoring comments and staying away from content that isn’t helpful.  

My reaction when someone comes at me with the latest miracle cure.

Moving forward

Illness is still an awkward subject for many. It’s no small task to communicate that this kind of advice is not only unhelpful but damaging. Accepting that there will always be people who say the wrong thing may keep you from pulling your hair out. Rest assured that attitudes are starting to shift. Social media has given the MS community a powerful voice, and on those days when you don’t feel like smiling and nodding, it can be empowering to share your experience on a broad platform that just may change a few minds.

Toxic targeting isn’t limited to the chronic illness experience, and most of us have likely been both the giver and receiver of unsolicited, unhelpful advice. When we know better, we do better; and hopefully, having the perspective of being on the receiving end of so much unwanted guidance means we’re less likely to inflict these micro-aggressions on others.

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How To Be Proud Of What’s Broken This Disability Pride

Scrolling through the interwebs I learned it’s Disability Pride month (in NYC; so, basically, it’s Disability Pride everywhere because NYC is the centre of the uni, duh), and my stomach kind of flip-flopped, because even though I’ve had MS for 19 years, of all the identities I claim and am proud of, my disability feels like a pretty messed up status to throw a party hat on.

Start spreading the news.

Also, parades are the worst. Even accessible ones. They’re boring; they’re full of children, there’s too much standing, fucking clowns, someone always throws up. I’m not putting on sunscreen to watch a 2-hour traffic jam whose soundtrack is a shitty high-school band. You know what’s worse than marching? Watching people march. 

There’s a reason parades are free.

Thanks to COVID, I can calm down; because, at least for now, parades are canceled, except I don’t feel off the hook for participating in Disability Pride. I mean, these are my people, right? After 19 long years of living with MS, I owe it to the chronic illness community to figure out my feelings about disability pride. At the very least, I may discover an excuse to drink champagne. Do we get presents? Is there cake? I don’t know how these things work.

Wait, what? 19 years? How come you haven’t figured this out already?

My complete ignorance of the existence of past Disability Pride celebrations, for sure has something to do with the fact that disability visibility is still woefully lacking; but, it might also have something to do with the fact that despite living with some pretty disabling MS symptoms (pain, fatigue, spasticity, vision so low I can’t legally drive a car, and a bladder that only works with a catheter), for many years, I didn’t actually think of myself as disabled. I only occasionally use a wheelchair, and all my limbs are attached. MS was something I had (a disease). It wasn’t something I was (disabled), until I started to need mobility aids and people started asking “What’s wrong with you”.

Disabled was an excruciatingly difficult identity for me to accept.

Having an incurable disease versus having a disability might sound like semantics; but, to me, the distinction was huge, and I rejected the idea that I was disabled. Rejection, though, feels like the wrong word, because, really, I never even considered it. (Internalized ableism much?) 

For whatever reason, denial seems to be particularly encouraged in people with MS. From the moment we’re diagnosed, we’re told not to let this disease define us. In response, we vow to never let MS change us. We tell ourselves, “I have MS but MS doesn’t have me”. We somehow think if our will is strong enough, we can simply decide not to become disabled.  

And who could blame us? Culturally, we understand disability to be a very bad thing. Possibly the worst thing. There are people, lots of people, who believe that disability is a fate worse than death. We don’t define disability as different. We define it as less-than. So why would I succumb to a disabled identity, let alone slap on a sash and be proud of it?

Because those people are wrong. 

If pride, in its simplest form, is a feeling of dignity and self-respect, maybe a little bit of a humble-brag for some of the things I’ve accomplished, then sure, sign me up for some pride. Easy-peasy. I have plenty to be proud of. But we’re talking about Disability Pride, and it feels itchy and uncomfortable to be proud of my disability when all I want to do is murder my disability. How can I be proud of something that diminishes me? That brings me to my knees? How can I be proud of the weakest part of me; the thing that everyone is afraid of, and afraid of becoming? 


Being proud to be disabled isn’t about liking my disability. It isn’t about pretending that disability doesn’t straight-up suck. Rather, claiming disability pride is a rejection of the notion that I should feel ashamed of my body or my disability. It’s a rejection of the idea that I am less able to contribute and participate in the world, that I take more than I give, that I have less inherent value and potential than the able-bodied Becky next to me. 

Fuck that shit.

Declaring my pride means that I don’t accept society’s definition of disability. Loving my disabled body is a radical act that can challenge the way people think about disability; one that promotes the idea that it’s normal to be imperfect.

Turns out there are lots of reasons for me to celebrate Disability Pride. But, in truth, I realize I must celebrate Disability Pride. Because, if I can’t be proud of my disabled life then I am contributing to the idea that disability makes me less-than. That’s a toxic message to put out into the world – one that diminishes others with disabilities and one that reinforces ableist institutions. Worst of all, it’s a dangerous message to give myself, and I think too highly of myself to do that.

Disability is part of who I am, and I am proud of what I’ve done with these circumstances. Disability pride isn’t about what I’ve lost, or what I can’t do. It’s a celebration of life, and a recognition that all bodies have value and deserve a parade with a high-five from Santa himself. 

Disability pride acknowledges that I can do hard things; that I’m still here. Some days, that alone feels like enough to be proud of. So this July, I will slap on a party hat, pop open a bottle of the good stuff, and raise a glass to my broken body, and to yours as well. Happy Disability Pride, Trippers.

What are you proud of?

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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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Stupid Sh*t People Say

One day, when I was in high school, I was riding the city bus when a friend I hadn’t seen since grade school got on. We were both 15 and to my surprise, she was eight months pregnant. When I saw her I gasped, “Michelle! How did this happen?” She rolled her eyes and muttered something about the ignorance of virgins and made her way to the back of the bus. 

Even at 15 I had enough going on to regret the words I’d said as soon as they’d left my big stupid mouth. Years later, I still cringe when I think about it. We all say bone-headed things and I’ve found my own foot in my mouth many times since then. I try to remember this when someone barfs out something mind boggling to me and I tell myself they agonize over their most idiotic declarations as much as I distress over mine.

As someone with an often misunderstood illness, I hear stupid shit with astounding regularity. I’ve learned not to take most of it personally, but sometimes these off the cuff, seemingly innocuous comments can be reflections of questionable beliefs that are deeply imbedded in our society. 

As luck would have it, I’ve been on the receiving end of some of these questionable comments over the last couple of days. In response, I’ve been using my well trained side-eye a little more than usual and so rather than risk pulling a muscle in my face, I’ve decided to call a few things out here. 

My first raised eyebrow was directed towards some classic Dime-Store Philosophy, when a casual acquaintance lamented to me that ‘everything happens for a reason.’

I didn’t bother mentioning that I don’t believe my disease was sent to me for the greater good of teaching me some mystical lesson. I simply glanced at my cane and shrugged, saying I don’t really subscribe to that way of thinking. My philosopher friend then doubled down and said if not for some reason, then karma. Oh? 

Please tell me more about the ancient spiritual principles of Buddhism (you WASPy hipster.)

Since I am a lady and sarcasm is unbecoming, what I actually said was an exceedingly polite and sincere “Karma? Interesting. I wonder what the fuck I did?” My politeness notwithstanding, things wrapped up pretty quickly after that. I get it that lots of people think this way. I may have even believed some of these easy ideologies myself before gaining a little life experience. To each his own. But here’s a bit of free sensitivity training: Don’t say this shit out loud. I mean, know the room. There is tragedy in this world. Assigning a reason to someone else’s suffering is just, ew.

Seriously. Just don’t.

My adventures with verbal faux pas continued into the next day when The Banker and I headed to the baseball game. The good people at The Roger’s Centre have a service where those requiring assistance can be met at the gate with a wheelchair and brought to their seats. I decided to take advantage of this in the interest of saving myself from a long walk, stairs, and crowds that can be hostile to my slow gait, and blind to my inability to defend myself against the shoving and jostling that happens in a moving throng of people. These employees are well trained and do a great job. It’s a lovely service and without it I might otherwise have stayed home. 

When we arrived at our section, we were met by another employee whose job it was to direct people to their seats. This attendant did not seem to have received quite the same kind of training as the disability services team. When she saw me rolling up in a wheelchair, she called out loudly:

“Well, aren’t you lucky!” 

Her high pitched, sing-song voice was something usually reserved for speaking to people under the age of seven but it’s a phenomenon that sometimes happens to adults when being spoken to while seated. Strikes one and two and the game hadn’t even started.

The words were ringing in my ears and this wasn’t even the first time I’d heard something like this. Here’s why I’m throwing shade at it. What she said was so obviously wrong, but it’s not what you’re thinking. Okay. It totally is what you’re thinking. In our lazy as hell society, why would I want to walk when someone else can do it for me? I mean, who wouldn’t want that, right? (I heard it. Turns out I’m not much of a lady.)

It’s also this. When someone says ‘Aren’t you lucky?’, it implies that I’m the recipient of some over and above special treatment. Like I’ve won a damn prize. While everyone else at the game deserves to be there, I’m only lucky enough to be there because of the benevolence and generosity of someone else. Yes, it is a great service and I’m happy it exists but it should not be considered a charity and to tell me I ought to feel lucky to have what amounts to the same access as everyone else is diminishing and insulting and not at all what I’m sure the stadium intended. It’s a service that is provided because it’s the right thing to do. It’s the ethical way to run a business. I don’t feel lucky that I’m invited to participate in something like a baseball game. I feel like a valued and equal member of society.

I know there are many places in the world where people with disabilities are not treated with the same regard I was afforded at the Jays’ game. Hell, there are many places in Toronto where that is the case. I appreciate that I’m fortunate to live in a country where progress is being made in terms of how we treat our most vulnerable but it’s comments like ‘aren’t you lucky’ that are indicative of an endemic, misguided attitude towards disability. One that says, You don’t belong here quite as much as the rest of us. And furthermore, We don’t have to include you, but if we do you’d better recognize how magnanimous and charitable we are. I don’t want to sound like some angry cane wagger but this attitude needs to change. Equal access isn’t a benevolent kindness. Under the Ontario Human Rights Code, it’s the law, bitches.

Okay, true confessions time. What’s the stupidest thing someone has said to you? You can only answer if you’re willing to cough up something boneheaded you’ve said. Guys, our heads are made of bone. It’s bound to happen so get it off your chest already.

In the mean time, I’m gonna pour myself a glass of wine and think about the time I complained to a colleague about the incompetence of the guest lecturer we were forced to endure. A guest lecturer who turned out to be my colleague’s mother. Natch.

The Frustrating Truth About MS Awareness Month

March is Multiple Sclerosis Awareness Month and you don’t have to tell me twice. Oh, I’m well aware of Multiple Sclerosis. MS screams in my face all day long and then wakes me up at night.

And thank God it’s almost April, because I’m so sick of seeing orange ribbons everywhere and hearing about MS from every news outlet. 

Oh wait. I mean the opposite of that. 
Sit down. It’s about to get rant-y in here.

Unless we’re talking about a package from Hermès, my favourite colour is decidedly not orange, but as the official colour of MS Awareness Month it’s lack of visibility is actually a little troubling, because we need considerably more awareness. MS is poorly understood, grossly underfunded, and affects a staggering amount of people. 

When we do hear about MS the message is confusing. Even within the MS community we can’t agree on what that message should be. There is significant controversy about how this disease is portrayed in the media, and in drug company ads. The overwhelming majority of what we see are glossy images of young and healthy people doing athletic things, smiling and happy. The kinds of pictures that entice us to try new medications. They’re the pictures of what we all hope to be. They serve to soothe and comfort the public that the number one neurological disease affecting young people worldwide is manageable. They promise good health with a simple pill, maybe a teeny injection. These images are well received by many patients for whom this ideal is even remotely possible, and can be especially comforting to the newly diagnosed who are looking to see what their lives might come to look like.
I totally get this.
When I was diagnosed I read everything I could. It was terrifying. I attended a support group and wanted to throw up the minute I walked in and saw people who looked sick. I never went back. I hated the MS Walk because I couldn’t bear to see people in wheelchairs. Instead of compassion, my own fear was reflected back at me. I felt panicked over my future. Seeing the effects of MS was more than I could handle. These were not my people. I was in my early twenties, dating and pursuing a career. I wanted to see the people who looked like me; the people who were doing well, the people who could reassure me my life wasn’t falling apart. I remember someone pointing out a woman in her 40’s who walked with a cane. I was told “She’s had MS forever and she only needs a cane”. Only? I swore I would never become that sick. As someone newly diagnosed, I wanted to protect myself from the scariest stories; the more images of people with MS pursuing ‘normal’ lives, the better.
At the other end of the controversy are those that are angry at the  ‘normal life’ depiction of MS. Who feel outraged that the dancing, rock climbing, happy, ice-cream eaters are not a true representation of what MS actually looks like. After 15 years of MS, I get this too. I know it’s tragically laughable to promise yourself you will never become so disabled as to need assistance walking, and yet I still hear others make this promise to themselves all the time. I also know how hurtful and utterly douchey it is to say this out loud. For clearly the implication is there are those who simply didn’t try hard enough to keep from progressing. I understand why people are pissed to see this Pollyanna presentation of the disease that looks like a lie for so many and that leaves their experience with it completely ignored and invalidated.
The message about MS is murky because the disease itself is murky. It presents dramatically differently from person to person. Even within the same person from year to year. My own disease looks nothing like the disease I had ten years ago. My story is different now and so is the information I need, want and can handle. As patients we can’t agree on one simple narrative because there isn’t just one. What we all have in common is an uncertain future and a need for more action, for the best minds of medicine and science to attack this head on. Yes, many live a long time without much progression. Tell those stories. 
But tell the other stories too. 
Because as comforting as the best case scenario may seem, there is real danger if we only tell that story. When we sugar-coat the potential of MS we end up in a society under the false impression that MS is under control; that we’ve got it figured out, and shouldn’t we move on to the next thing? We end up in a world where people ask “Why don’t you just take that drug I saw on tv? Doesn’t that fix it?”, or “Didn’t we cure that with stem cells last week?” 
The truth is MS is most definitely not under control. Even if these drugs benefit some, they are only capable of impacting a fraction of MS cases. We’ve spent billions developing new therapies to modify disease – why are so few research projects looking at determining the underlying cause? Because the drugs we have are simply not enough. None provide a cure, and none address the underlying cause. They are wildly expensive and have plenty of serious side effects.

Educating is not about spreading negativity. It’s not about fear mongering. It’s certainly not about failing to celebrate all the wonderful things people with MS on any spectrum of the disease can and do accomplish. But let’s nor forget, MS is a brutal diseaseThere are no guaranteed outcomes but we must give voice to all possible outcomes. We cannot, and we must not, ignore those who embody our worst fears. People with more progressive MS are being erased from the conversation. When we fail to raise any alarms about MS we fail to mobilize the necessary resources to do the research and the work that so desperately needs to be done. It’s in everyone’s best interest to get this thing cured no matter how well you think you’re doing. 
In the MS narrative the story about how you can live a full life with MS already seems to be getting its fair share of attention and that’s good. There’s an important place for that. But we need to tell the whole story. The number of people living with MS is shocking. In Canada alone rates are as high as 1 in 1000 to 1 in 500 in some places. Orange is indeed the colour of MS Awareness. It’s also the colour of warning. We need to sound the alarm. It’s time to tell the whole story.
End rant. 


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MS Sucks. Can I Be Thankful For It?

How can I be thankful for something that takes so much?

I’m grateful for MS. I know. I just threw up in my mouth. Tastes like blasphemy.

I’m grateful for MS, but this isn’t a post about silver linings or looking on the bright side. I will not ask you to drink from your half-full glass of rose-coloured rosé before you put your head back in the sand. Let me be very clear:

MS fucking sucks. 
There is nothing inherently good about this loathsome disease, and I wholeheartedly believe in saying it sucks, when it sucks. And it sucks.
Sucks. Sucks. Sucks.
And I will keep saying just how much it sucks as I suffer through every miserable moment of rage, and angst, and grief, on the highway to Sucktown. I will mourn every loss, and every lost potential. I will scream and I will cry. I will let it out. And I don’t want anyone telling me to feel better.
What I do want from my posse is for them to listen, to pour me a glass of wine, to put their arms around me, and to whisper that they love me. I want them to hand me the tissues while telling me they don’t know how it’s possible, but I’m even prettier when I’m crying. 
When the dust settles as it always does, I will take a deep breath and say I’m grateful for every single shitty thing that has ever happened to me. Of course it’s way easier to do this long after a crisis has passed. Time affords healing, clarity, and perspective. And ultimately, the ability to recognize what I’ve gained throughout it all, and that is resilience. 

Resilience is one of the most valuable skills we can cultivate and there is simply no other way to get it than through first hand, tough as shit, life experience. MS is the steep price I’ve paid for that which has turned me into rubber. 


Tough, bouncy, resilient, rubber. 
Most of the blessings we name at Thanksgiving are transient and temporary. Eventually we may lose some of the material things we appreciate. We most certainly will lose loved ones we hold dear, and eventually all of us will confront our own struggles with health and mortality. How not to get swallowed up in the overwhelming suckitude of it all?  

Giving thanks for the fragile and fleeting can ground us in the present. It’s important to count these blessings. But this Thanksgiving, I’m feeling particularly grateful for something less tangible, but perhaps more enduring. Something I might even have a little control over.


Dear MS, Thanks for the awesome life skills. What I really wanted was a Chan Luu scarf, but I get it. In this economy.
Blah, blah, blah, hardship builds character, right? I’m not convinced I would actually choose a strong character over strong legs, but since I’m stuck with ‘life experience’, when the next MS meltdown strikes, I can remind myself that my ability to adapt has been earned and learned and lives deep within me. Even if my body breaks, I won’t be broken. 


I’m still here. 

I know how to do this. I’m sure my resilience has a threshold. We’re talking rubber, not steel. But I’m surprised and grateful to learn I haven’t reached it yet. 

In the immortal words of the great Chumbawamba, 
I get up again.

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