chronic pain

Nutritious Negativity

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In a culture that prefers disabled people when we’re smiling, I’m what you might call a bad sport. Cheerfulness in the face of a challenge is all very well, and my natural disposition is upbeat, but toxic positivity is an enemy I’ve confidently opposed for most of my life. Good vibes won’t grab a broom for you when your half-full glass is in pieces on the floor.

I’m convinced toxic positivity makes it harder for marginalized people to be honest about their pain, even with each other. Don’t get me started on the unrealistic expectations we place on ourselves when we believe the only worthy disabled person is one who does what nondisabled people do, only better. Writer and cancer survivor Barbara Ehrenreich distilled this well, observing how ‘no negativity, just vibes’ encourages us to “deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.”

Pay attention and you’ll see how much the world rewards a cheerful, reality-denying, optimistic disabled person. It celebrates them when they manage what is presumed impossible. It is satisfied when they gently, bravely accept a life that is less-than. It rewards them a whole lot less when they point out problems, admit how much their circumstances suck, or ask nondisabled people to adapt.

More and more, however, I am troubled by what happens when despair takes the place of plucky heroism. As a somewhat cynical person, I find it tempting to dwell on the ways I’ve been mistreated, overlooked, misunderstood and under-resourced. Yet, most of my proudest and bravest moments happened because I stopped dwelling, focused on what was in my control, and got shit done. If I fixated on what I wasn’t taught as a kid, I’d never have learned anything new as an adult. If I focused on what wasn’t done for me, wasn’t available to me, was denied me, I’d never have been able to build a life worth living. I am where I am in part because I knew when to wrench myself out of the disappointing past and dream of a future worth fighting for.

I’ve seen too much unnecessary and unjust suffering to believe the disability prosperity gospel, a bootstraps doctrine that refuses to hold systems to account. But I’d be lying if I didn’t admit our attitudes can sometimes determine what is possible for us in a flawed world. Determination can fill a lot of gaps left by inadequate education, poor skills training, and unenforceable accessibility legislation. I’ve scaled quite a few walls by working hard and refusing to go away. I couldn’t have done any of that if I didn’t believe on some level that the effort was worth the hardship.

I submit that nutritious negativity can hold us as we tread the murky water between frozen smiles and slumped shoulders. Nutritious negativity is a no-nonsense motherly type who sees through our pretenses and has no patience for them. She makes room for complaint. She welcomes sincere lament. She is not afraid of the anger that has fuelled justice-seekers since the beginning. She teaches us to listen, tell the truth as best we can, and practice presence as we engage with the suffering of others. Nutritious negativity doesn’t ask us to deny what is true, nor does she tolerate empty despair. While she may ask you to stop dwelling, she will grieve alongside you and never demand a smile.

I don’t want to live in a world where my genetic disorder is somehow my fault, where my chronic pain is attributed to a negative attitude, where my mental health would magically improve if I pretended harder. But I do want to live in a world where imagination and resilience will come to my rescue when imperfect systems let me down, because they always will.

We need to complain. We need to point to our half-full glasses, in pieces on the floor, and say, “This is not okay!” Only when we make space for “This is not okay,” can we progress to “This is how we make it more okay.” Dismissing those brave enough to admit more work is needed won’t change reality for disabled people; it only makes reality rosier for nondisabled people who can afford to ignore it. As is often said, privilege is being able to stay neutral because your life isn’t affected either way.

At the same time, we need wild hope and irrational optimism, because sometimes that’s all we’ve got. Plugging away at the impossible is not especially awe-inspiring, day to day, but I have seen its power, over and over again.

Some disabled people are singing songs of triumph, glowing with pride at how far we’ve come. Others are singing protest songs, overwhelmed by all the work that is left to do. Many are humming quietly, content enough but wondering, a little guiltily perhaps, if this is all there is. Let’s learn to listen to every voice in this splendidly diverse chorus. We need them all.

Happy, Capable, Aggressively Okay

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For someone who has always dated men, I have fallen in love with a lot of women over the years. Of course, I didn’t recognize it as love at the time. I was a practically ancient twenty-two before I was sure of my queerness, because I was laughably out of touch with my own feelings. The archetypal queer story line, the one where you know it since kindergarten and come out all at once in a supreme act of courage, never fit me.

I came out slowly, haphazardly, often forgetting whom I’d told and whom I hadn’t. There were no secret girlfriends or covert confessions. There was no formal announcement, no awkward family meeting, no mess. People were either supportive or apathetic, given I had always been with men and it didn’t feel relevant to them. And because there was no closet narrative to speak of, I never quite owned my own bisexuality. It wasn’t hard-won, it didn’t oppress me in any meaningful way, so it felt like I’d cheated, somehow. That’s probably why I hardly ever talk about it; it doesn’t feel entirely real or entirely mine.

Recently, I’ve been thinking more about why it took me so long to realize that I was attracted to women in the same way as men. Some of it was the power of repetition. I always assumed I was straight, “straight as an arrow” as I used to put it, so when I experienced intense feelings for a woman, I imagined all women felt that way about their friends. Spoiler alert, younger self: No they do not.

But the more significant reason for my deep denial is related to my disabilities. When you grow up with needs society deems “special,” it’s hard not to resent your own body. Everything you are told about yourself as a disabled person is dusted with subtle (and not-so-subtle) messages about independence. At home, at school, at work and just about everywhere, you are served the paradox: You are dependent, and you should never depend on anyone. You are not as capable as others, and you should be as capable as everyone else. You are not okay, and you must always be okay.

Early on in my journey as a visibly disabled person, I learned to minimize and ignore my needs. I was the kid who wouldn’t ask to go to the washroom because she didn’t want to draw attention to herself, leading to inevitable and embarrassing consequences. I found it difficult to ask for food when I was hungry. If I got lost, I had trouble asking for directions. I made myself small, believing on some primal level that my needs were bad and wrong.

As I got older and better able to meet my basic needs independently, I learned to ask for help related to blindness, chronic pain, or mental health. I understood that interdependence was the only way I’d be a functional human being, so I mastered that uncomfortable art and gritted my teeth through the asking.

But I was more sure than ever that needing things was bad and wrong, so I sidelined my non-disability-related needs instead. I allowed myself to be bullied. I refused to share my struggles with most people, even those willing to help. When asked how I was doing, I was adamantly, aggressively okay. In that way, I made myself even smaller.

What does this have to do with queerness? If you’ll excuse some gender generalization, everything.

See, I was almost always able to convince men of my strength. If I told them I was just fine, even with ample evidence to the contrary, they usually believed me. Women, on the other hand, seemed to see right through my hard-shelled deception. Many men have cared for and nurtured me over the years, some of them perceptive enough to notice when I was trying to be a hero. But the women I kept falling for—elder siblings, motherly types, people used to looking after others—were the ones who could not, would not be fooled, maybe because they’d used all my tricks to hide their own pain. They were the ones referring me to crisis teams and buying me groceries because they knew damn well I was hungry and dangerously not-okay. They were the ones trying hard to save me from myself, doggedly asking the hard questions, at times offering help in ways that made me feel overwhelmed and resentful.

One of my crushes was so persistent I accused her of being a Mother Teresa type, which, far from deterring her as I’d hoped, seemed to embolden her. (I’m very good at making people go away when I fear they might actually get to the heart of who I am. She would not be fooled and she would not be turned away.)

All of this was hidden from me because of my afore-mentioned denial skills. It’s only in the past few weeks that I’ve realized I am not an open book with the vast majority of people in my life. Friends and relatives have complained that they can never get anything out of me. I tend to redirect conversations back to the other person if things get too serious. Part of me is still fiercely guarded, and I was the last to know about it. I tend to pull back when I sense someone is starting to understand me a little too well, and the moments in which I do overshare happen because I am so closed-up the rest of the time.

Lately, I’ve been sidelining my emotional needs less. I’ve been reminding myself that those who love me are pleased when I share my burdens and hurt when I don’t. I should not shy away from love’s vulnerable imperative. I should receive it as the counterintuitive, subversive gift that it is.

None of my needs is bad or wrong. No disabled person’s needs are bad or wrong. We should be teaching disabled kids to speak up loudly when they’re hungry, thirsty, lost, scared, or in need of a washroom. We should be encouraging disabled people to welcome, not apologize for, their very human, very normal needs. We should assure them that interdependence is positive and necessary, that they need not pay for their “special” needs by pretending to be aggressively okay. We should remind them of their legitimacy as healthy human beings with emotional and spiritual needs, and we should drown out the drumbeat of shame society forces them to march to each day. They’ll get plenty of that shaming from people who don’t love them the way we love them. Contrary to popular belief, hearing these narratives from loved ones is not less painful than hearing them from strangers, nor are these messages particularly helpful.

Listen, friend who is reading this and thinking, “I see what you’re saying, but…”

I am not telling you to abandon advocacy, independence and self-reliance. One of my greatest personal treasures is my ability to take good care of myself when I must. I am only telling you that you cannot make up for your disability by refusing to lean on the world in any other way. You can’t, and you shouldn’t. And when you meet someone who sees right through you, and wants to take care of you anyway, try letting them, because nondisabled people lean all the time. We just don’t call it “accommodation” when they do. Mostly, we call it love.

Whether you know it or not, friend, your refusal to lean as others lean is costing you. One day, you will be in great, undeniable need. One day, you will come to the end of yourself, of what you can do, and you will have to reach out. Take it from someone who knows: It’ll be a lot easier if you practice.

The Privilege of Showing Up

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Every time I look at my phone these days, the Zoom hate is everywhere. People can’t wait to get back to “real” life, where almost everything of consequence happens in person. My postsecondary student friends are daydreaming about returning to campus in the fall, all of my colleagues seem more than ready to have meetings around the boardroom table again, and my family is already planning crowded social events once everyone is vaccinated.

As for me, I miss the energy of in-person gatherings, a little, but I can’t deny that this “fake” life people can’t abandon quickly enough has been pretty kind to me, accustomed as I am to a world where showing up in person is perceived as essential. Demonstrating competence, commitment and success demands your physical presence, whether or not said presence is logistically required. That hasn’t worked out so well for me.

You see, I am not known for my in-person attendance record outside of work contexts. Chronic pain sufferers often struggle with uneven energy reserves and mobility, and my subpar travel skills as a blind person don’t help. I was the kid who missed a staggering amount of school, forever behind and fighting to catch up. In university, when my pain levels were at their highest, I once missed two thirds of my classes in a single semester. Rarely did I commit myself to non-essential in-person events of any kind, because I hated the shame of last-minute cancellations. Just because people were mostly gracious didn’t mean they weren’t quietly categorizing me as flaky.

In the past year, my schedule has looked quite different. Social events every other week. Book clubs. Committee meetings. Resource group chats. Live readings and author interviews. I’m signing up to everything, planning potential presentations, even doing a little on-the-fly consulting work. I hardly recognize myself.

The difference, of course, is that everything is virtual now. I can attend a book club in Minnesota, watch a live performance in New York City, participate in a Q & A in Colorado. Signing up to serve on committees and resource groups, in and outside work, requires no more of me than an internet connection and my willingness to be useful. No taxis, no transit, no anxiety about finding the venue or locating a seat. No getting lost or looking foolish. Just logging in like everyone else.

If I’m in horrible pain and can’t travel? No problem. I medicate as needed, grit my teeth, and get through the meeting as well as I can. No one needs to know I’m attending from my bed. If my camera stays off, they don’t even need to know I’m blind, necessarily. (The way I am treated before versus after people find out is a story for a whole other post, by the way.)

Until the world opened up for me in terms of accessibility, I assumed I was especially disengaged. I figured I was just not a group person. Not a committee person. Not a ‘show up to everything’ person. A home body, you might say, who didn’t gain energy from interacting with others outside of small, intimate groups.

Sure, I’m still an introvert who is choosy about what she signs up for. I only have so many spoons, and I want to use them wisely. But now I have a better sense of what I’m capable of as a professional and social contributor, because so many of the barriers are temporarily removed. It turns out that I like showing up and getting things done as much as the next person; there was just a great deal in my way. The same might be true for someone who finds in-person activities easy but who doesn’t have a stable internet connection, or gets fatigued by screens, etc.

This is not an original take, I know, but consider this post my plea for a thoughtful, accessible approach to returning to “real” life. It’s past time we adjusted our ideas about what constitutes competence, commitment and success, because not everyone can or should show up in the same ways, and it’s ableist as hell to assume a physically present person is more invested and more worthy than someone who can’t attend.

Lots of people have hated every second of this lockdown lifestyle. Some of us have never felt less locked down. Let’s think seriously about why that is, and what we can do about it.

Perhaps we should start a committee? I’ll send out some Zoom invitations. I do that now.

Who We Are When Life is Good

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How much does society love talking about the impact of adversity on disabled people? The polishing powers of struggle, turning us all into sparkling gems? The motivation that comes from being told we’ll never be good enough, never measure up, never prosper? The myriad obstacles we’ve ‘overcome’ to be the people we are?

As a person with multiple disabilities, I can tell you with confidence that we love it a whole lot.

We love talking about it so much that you’ll rarely hear about anything else. Stories featuring disabled people centre around their troubles and barriers and the Debbie downers who insisted they’d never succeed. Disabled people are forever prompted: Tell us about the haters. The doubters. The people and institutions that stood in your way. Did all that negativity make you work harder? Did it make you stronger? Was it the driving force behind all your ‘inspirational’ achievements? Less often are we asked about positive sources of strength and power.

Societal hunger for tales of marginalized struggle is so voracious that I wonder if, on some deep, dark, shameful level, we quietly enjoy the idea of disabled people having to suffer in order to earn their place in the world. If access comes easily, if an environment is supportive and if barriers aren’t blocking a person’s path, do their accomplishments count?

Maybe not, or at least, not as much. No one wants to hear a story without conflict, so what’s the value of a disabled person’s story if it doesn’t involve plenty of misery?

This romanticism of struggle bled into the way I viewed my life, even as I was living it. I kept waiting for the adversity I faced to make me better, more resilient. Mostly it just made everything worse.

Logic dictated that being a blind person in a visual world would make learning, travel, and daily life more complicated. Of course debilitating chronic pain would make me less dependable, less inclined to pursue great things and explore my creative side. Why wouldn’t mental health issues contribute to my low energy levels and aversion to new challenges? Wouldn’t it be odd if they didn’t?

And yet, because I’d grown up surrounded by triumphant stories of struggle, of people being more successful precisely because they had suffered and come through, I expected that, if anything, my disabilities meant the bar was even higher for me.

The shoulds came thick and fast: my mental ill health should turn me into an unpredictable but admirable genius. My blindness should help me smash barriers to bits with superhuman aptitude. My personal haters and doubters should spur me to work harder, instead of making me feel unwelcome and afraid as they were trying to do.

Now, with the benefit of hindsight, I understand that I thrive best when my health is good and my environment is supportive. At present, I’m surrounded by positive, encouraging people who want me to flourish, and by God I’m flourishing. No longer do I cower at the very thought of a real challenge. Weirder still, I’m a bit of an adrenalin junkie. I crave variety and I need constant, low-grade stress to be content. Give me a new project, a tight timeline and vague instructions, and watch me crush it. If you’d told me all this five years ago, before I’d ever known such support, I’d have laughed in your face. “No no,” I’d say, “I’m more of a ‘scared of my own shadow’ type.”

As far as I can tell, I owe very little to pain and suffering. Adversity has been useful enough in some ways, but I will never claim to do my best work while beset by destructive forces. Shocker of all shockers: Not everyone soars in the middle of a hailstorm, and it’s strange and sad that we ever expected they should.

Perhaps you’re one of those remarkable creatures who functions well under the worst of conditions. Maybe you’re doing great during this pandemic, while most of the world flounders. It’s possible you’re one of those unicorns, disabled or nondisabled, who confronts terrifying situations—bullying, discrimination, six-lane intersections—and comes out of them more badass than ever. (Teach me thy way!)

But I’m not a unicorn. Many, many of my disabled friends are not unicorns, either, and we get down on ourselves when the troubles that are supposed to make us better end up tiring us out instead. Lots of us get bullied, discriminated against or hit by cars in six-lane intersections, and then we go home and cry because it hurts and it sucks and we hope it’s a long time before we have to go through that again. These things may not break us, and we might get a good blog post out of them if we’re lucky, but we sure as hell bend.

Let’s share some new stories — stories that make room for people who get things done in times of crisis, yes, but who also know the value of environments where they are supported and encouraged. I want to amplify stories about disabled people who get the tools they need, the access they deserve, and the inclusive communities they crave, and who accomplish wonderful things as a result.

I’ll start: Once upon a time, there was a disabled gal named Meagan who did okay in the face of adversity, but who wanted more from life than leaping from hurdle to hurdle. After years of being low-key miserable and unable to fulfill her potential, she found the access and support and community she needed. She blossomed. She accomplished some very cool things, which were no less valid because she wasn’t ‘overcoming’ anything more daunting than her own self-doubt at the time. Also, she had very few haters, and that was handy. She lived happily ever after, terrible mobility skills and nasty migraines and inconvenient mood disorder notwithstanding. (My blog, my ending.)

Not exactly riveting, sure. But it’s kind of a nice change, don’t you think?

Stay safe and healthy, folks, and make some space for happy stories.

Dreaming of a Quiet Christmas

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Last Christmas, I gave you my—

Okay, let’s try that again, sorry.

Last Christmas, my family did something we’d never done before: We skipped the boisterous Christmas Eve crowds and had a quiet evening at home. My nephew had been born just a few days previously, and it didn’t make sense to hit the Christmas party circuit just yet. The six of us lounged around watching movies, playing board games, holding the sleepy baby, and petting the cat.

We could have been making merry with a few dozen relatives, surrounded by noise and general jollity. We could’ve juggled three conversations at once, laughing until we ache, but instead we sat quietly together, doing nothing of particular note.

Readers, it was glorious.

At least, it was for me.

It feels silly to admit it, but I didn’t know Christmas could be like this—cozy and intimate and low-key. Besides a few awkward Christmases among an ex’s scattered family, I’d never experienced holiday festivities that weren’t loud and chaotic. I’d never known a Christmas Eve that didn’t involve confusing buffet meals and houses so crowded we were stacked on each other’s laps like sets of folding chairs. The very essence of the holidays was wrapped in full-volume, full-house, full-throttle enjoyment, with a sprinkling of excitable children in the mix.

It was fun, sure, especially when I was a kid. But I’ll admit this too: It was exhausting.

When you can’t see well enough to navigate crowded environments, can’t handle noise well, and can’t “extrovert” for more than a few hours without depleting your energy, the holidays are anything but vacation-like. Generally, I socialize with more people than I can handle, while surrounded by more noise than I can physically tolerate, all while struggling to guard my Christmas spirit and avoid disappointing people with my failure to bring the cheer.
Attending Christmas drinks with colleagues at an incredibly loud pub hammered the point home: I am simply not wired for traditional expressions of celebration. My idea of a good time is a very small (or at least very well-known) group sitting in a familiar, clutter-free space, preferably engaged in loosely structured activities that accommodate my blindness without aggravating my migraines.
Being in a large, crowded, less-familiar space, immersed in the din of conversation, compromises my ability to do fun party things like:

  • grabbing my own food or drinks,
  • initiating conversations with people other than those directly next to me,
  • moving to other areas to see what people are up to,
  • playing common party games that rely on sight, and
  • making my own way to the washroom when I need it.

“Well, Meagan, this is simple,” you say, “because you can just go home when you’re done, right?”

Going home a bit early Is made difficult when most Christmas parties I attend are in rural settings where Uber isn’t available and walking isn’t an option unless I’m okay with a multi-day hike. Of course, since everyone around me seems to love the party atmosphere, no one else is ever ready to go home when I am.

Ever determined to be my best self, I power through, well past my usual tolerance, and end up dealing with increased pain and fatigue over the remainder of the holidays. The spill-over effect from pushing past my endurance at one party will affect my enjoyment of the others, and I come back to work feeling as though I spent my Christmas vacation writing rush speaking notes while deadlines loomed over my shoulder.

Despite adoring my family and being a huge fan of holiday cheer, I find myself worrying about Christmas celebrations with increasing intensity. I won’t be heading home for the holidays for another week, but I’m already feeling tired just thinking about it.

So I’m dreaming of a quieter Christmas. I’m dreaming of a Christmas where I parcel out my social activities more carefully, where I learn to say no to some things so I can say yes to others, and go easier on myself if I’m just too stressed to muster that full-throttle enjoyment I wish I was feeling.
I’m dreaming of managing all this without hurting a single feeling or disappointing a single soul.

I’m dreaming of a holiday that actually feels like one—peaceful as well as joyful, and relaxing as well as merry.

Maybe, with some planning and boundary development and a little bit of courage, I can have a quieter, calmer Christmas that is kind to my body and easy on my poor beleaguered brain.

You know, since I’m dreaming and all.

Forget Sorry: No is the Hardest Word

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Saying no is hard. Luckily for those of us who hate to make waves, there are reams of advice out there about saying no on a date, at work, at holiday events, and in tough situations with family and friends.

Creating boundaries is uncomfortable, and enforcing them is worse. Nevertheless, I believe that many of us are getting better at doing both, despite people’s general inability to handle it gracefully.

The one area of my life where I feel that ‘just say no’ is punished more often than rewarded, even by those who profess to respect boundaries, is—you guessed it, clever reader—disability. I know in my heart that it’s better for my health, my safety, and my peace of mind if I say no to all kinds of things: unwanted help, condescending praise, unsolicited charity, events that worsen my chronic pain, exploitive volunteer opportunities, intrusive personal questions, etc. (I could go on for a long time. I’ll spare you.)

And yet in this, the year of our Lord 2019, it is still controversial, inflammatory even, for my disabled friends and me to say no to any of these things. When we do, we have to deal with a whole lot of anger, hurt, wounded pride, and bitterness, plenty of it from people who have power over us, and plenty more of it from fellow disabled people who enjoy sabotaging others’ autonomy almost as much as their own. Because of course.

Let me show you what I mean with a few comparisons. Comparisons are fun!

Saying no to unwanted touch on a rough first date? Scary, but empowering. Saying no to the person physically dragging you along because he thinks you really, really need help walking through that doorway? Ungrateful.

Saying no to the grandparents who want to load your kids with sugar? Awkward, but that’s just responsible parenting. Saying no to the relative who won’t stop feeding your service dog? That’s just a major overreaction.

Saying no to the free sample, the donation box, the religious pamphlet being offered by a stranger on the street corner? Totally your call. Saying no to the gifts, money, prayers, advice, weird coupons and assorted pity offerings from strangers on that same street corner? Totally uncalled for.

Saying no to the private company that wants your free labour in exchange for “exposure?” Gutsy; you deserve to get paid for your hard work. Saying no to the private company that wants your free labour because your identity provides the illusion of “diversity?” A disservice to the disability community; you should be grateful just to be noticed.

It didn’t take long for me to learn, as a multiply-disabled person, that like so many other marginalized groups, ‘no’ is not for disabled people. ‘No’ is not for people who want help in the future. ‘No’ is not for those who need to rely on people who hurt them. ‘No’ is not for the vulnerable. ‘No’ is not for those needing accommodations or assistance or a hand up. There is only ‘yes,’ and ‘thank you,’ and ‘thank you again!’ Anything else risks anger, risks strained relationships, risks exasperating conversations about ‘humouring’ people and ‘making them feel useful’ and not turning boundary violations into a ‘whole big thing.’

Do we routinely take these risks? Most of us do, yep. Is it exhausting, demoralizing and sometimes dangerous? You bet.

I’ve learned to live with almost every ‘no’ being met with questions like, “Why can’t you just keep the peace? Why can’t you just let them help? They’re just curious—why are you being so rude? Why can’t you suck it up? Why can’t you just be nice?”

Because, you know, being nice comes naturally when a stranger has his arm around my waist and is brazenly ignoring my ‘no, my ‘I’ve got this, thanks’, my ‘please let go, my ‘seriously—let go of me immediately.’ Niceness begets niceness, clearly.

So here are my questions, which will look familiar, no doubt:

  • Why can’t the person who is tugging on my arm be nice and keep their hands to themselves?
  • Why is a stranger asking me personal questions about how long I’ve been disabled, and what happened to me, and how on earth I manage? Why can’t they rein in their curiosity and stop being so rude?
  • Why can’t the person whose request for free work I just turned down stop making it into ‘a whole big thing?’
  • Why can’t the person petting, feeding, distracting my friend’s service dog suck it up and follow the rules?
  • Why can’t the person telling me I shouldn’t work, shouldn’t leave the house, shouldn’t participate in public space just keep the peace and leave me alone?
  • Why isn’t no enough?

If you ever find the answers, heaven knows my inbox is open. Until then, I’ll keep saying no, (often politely!), keep setting those boundaries, keep trying to change this toxic double standard we’ve all helped to create by being so doggedly nice, even when someone is harming us – especially when someone is harming us. I hope you’ll do the same.

Disruption, Script-Flipping, and the Art of Carrying on

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While riding the elevator this morning, a stranger paid me the kind of compliment that normally sets off alarm bells.

“You seem so independent,” he chirped, pushing the elevator button for me as he did so. (The irony, my God the irony.)

“Well, I’m used to being blind, so it’s no big.”

“But you seem like someone who doesn’t blame the world for your problems, you know?”

“I mean … I just sort of get on and do, right? That’s all you can do.”

“Exactly! See, not everyone gets on and does. You’re choosing to do it. I’m telling you, you’re a ray of sunshine.”

I did my usual smile and nod thing, internally preparing myself for the usual inspiration porn doom spiral. The script, well-rehearsed by now, goes something like this:

I’m not inspiring. There’s nothing praiseworthy about living my little life. People think I’m impressive but I’m not. I am reduced to their daily hit of inspiration. They’ll never really see me. I’ll never get past this. Bring me my saddest violin. Life’s but a walking shadow. Et cetera et cetera.

This time, for reasons I don’t yet understand, a different script presented itself: What if he was right?

Not precisely in the way he intended, of course. In the immortal words of so many of my visually impaired friends, ‘blindness is whatever.’ (We’re an eloquent bunch.) But could I, just this once, flip the script? Could I worry less about feeling guilty because I don’t educate every single person I meet? Could I be praiseworthy for “getting on and doing” for reasons other than my most prominent disability?

A mere hour before this interaction, I was talking myself out of bed. My tension pain was flaring up. My recently-healed back injury had left a grumpy ghost behind, always most irritating in the mornings. My depression was pressing down more heavily than usual, insisting that my very happy life was actually not happy at all. I was dealing with a longstanding accessibility issue at work, and I didn’t want to confront it today.

And I ignored all those reasons to stay down. Not such a grandiose achievement, nothing cinematic, but still: I carried on and did what needed done, independently, because that’s what I do.

Maybe my resolve, my tired but determined air, was visible to this kind stranger, even if he attributed it to the wrong struggles.

So, was I allowed to interpret his compliment in a way that made more sense to me? Is flipping the script, disrupting those nasty doom spirals, a legitimate way to deal with those moments where education just doesn’t fit? Do I ask myself way too many questions?

I’m gonna say yes. For the sake of my sanity, my energy, and my need to take a break sometimes: Yes!

Here’s to the noble art of letting the little things go.

Here’s to living as the person you are, not the one you think you ought to be.

Here’s to life being so much more than an endless parade of teachable moments, not all of which you can possibly be expected to seize.

Here’s to chilling out and, every now and then, taking that problematic compliment—because guess what?

You’re tired. I’m tired. You’re doing cool things despite the obstacles, and so am I.

So, by all means flip the script when you can. It’s good for the soul.

Enough With the Sick Day Humblebrags

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All my life, I’ve been surrounded—some might say afflicted—by troupers. You know the type: they can work through anything, raging fevers and hacking coughs be damned. Industriousness in the face of illness is a point of pride, and rest is for other, presumably weaker, people. Their insistence on being out and about when they’re contagious does cause some cringing from those around them, but discreet disapproval is nothing to a long-time trouper.

The trouper’s crowning achievement? They haven’t taken a sick day in ten, twenty, thirty years. Perhaps they did, once, but it was life or death, so that’s forgivable—just barely.

I’ve sat self-consciously among these trouper types, growing progressively guiltier as they list the ailments that didn’t stand between them and their work. Shifting restlessly, I’ve listened to them condemn people who choose to take sick days, trading anecdotes about rampant abusers of the system. I’ve begged the universe to disperse my atoms as they called for bonuses that would reward employees for refusing to use their allotted sick leave. No one stopped to consider what that might mean for people like me, even as I sat in their midst. Most irksome of all, no one stopped to admit that not needing sick days said less about their work ethic and more about the privilege of a healthy body—something many of them took for granted.

The idea that we shouldn’t come to work sick is gaining ground, though it’s cold comfort for people who don’t have the privilege of paid sick leave. Employees are encouraged not to expose their colleagues to contagious illnesses, and sick day guilt is finally being acknowledged as a mainstream issue. Doctors are calling for an end to sick notes, citing the valuable time wasted, the germs needlessly spread to vulnerable patients, and the hefty bills employees and students with common colds are left to pay. (A few months ago, my poor partner paid $40 for a sick note.) As a student whose migraines were not well-managed, I dragged myself to walk-in clinics and hospitals when I should have been at home, resting and suffering in peace. I, too, have paid pretty pennies for slips of paper that declared what I already knew: I had a migraine, and I needed bedrest. Hoops must be jumped through, and HR departments must be appeased, but that doesn’t make the system sensible.

Sick day guilt persists. Employees who should be resting will sometimes work remotely. They take calls when they should be sleeping, or answer emails from a doctor’s waiting room. People lucky enough to have access to paid sick time still have concerns about job security, workloads, and cover-offs. Despite cultural acceptance of self-care and work-life balance, feeling terrible about staying home is practically a cliché. Even when employers actively encourage time off, many employees–and I include myself among them–feel more comfortable toughing it out.

Aside from the usual bugs that strike everyone each winter, I deal with chronic pain in my neck, shoulders, and back. The pain typically manifests as nagging headaches, stiffness, and muscle aches. Occasionally, nausea, watering eyes, and disorientation will join in, making it difficult to focus. When the pain peaks, which isn’t often, thank goodness, I struggle to find words, concentrate, and even orient myself physically. Spurred by sick day guilt, I have insisted on working during those severe pain days, even when it meant bouncing off doorways or making silly errors. Anyone with sense could see I ought to be resting, not working, but growing up around all those proud troupers had left a powerful impression.

I hit my lowest point while working a summer job. A combination of emotional stressors and a new medication made my migraines spike, and I woke one morning with a leaden feeling of wrongness throughout my entire body. I got on the bus, limbs tingling, and realized I was getting yet another migraine. I crossed a busy intersection to access my office building, but was so dizzy I couldn’t identify which way was forward. When I tried to climb the steps into the reception area, my feet failed to make the appropriate motions, and I fell. Twice.

When I got to my office, I immediately began working, hoping I’d be able to make it through the day. By the time a colleague found me an hour later, I was draped over my desk, green and shaking. While a kind stranger drove me home, a bucket cradled in my lap, I understood that if I didn’t change, I’d be unable to work at all. An emergency hospital visit a few days later confirmed it: the guilt was unsustainable, and so was the trouper mentality.

Nowadays, I manage my pain much more consciously. I have several coping mechanisms I can use while at work, and I know how to ask coworkers for help and support. I take care of myself at home so I can function well at my job, and take the odd sick day without too much dithering about whether I deserve the time. This approach has meant I suffer less pain in the first place, and manage it more successfully when it does come along. My current work environment is a balanced one, and when I go several weeks without a severe pain episode, I feel lucky, not proud. I am not special for not needing sick days as often as some other coworkers do, and I know it.

Abandon the sick day humblebrags, and recognize that illness is not a moral failing. Avoid bringing that nasty flu into the workplace unless you’re positive your coworkers can’t get along without you. Stay home when you can, and strive for real, lasting recovery. If people take sick days around you, reserve judgment. Don’t treat your lack of need for sick leave like a badge of honour. If you have the option of taking paid sick time, coming to work when you’re unwell means you are either very stubborn or very dedicated. It doesn’t necessarily place you above your colleagues.

We’ll all have days when we feel as though taking a day of rest is not an option. We have too much to do. People are depending on us to be present, and we’re confident we can handle the discomfort. I’ve been there, and I’ll be there again. I’m not going to miss a file audit meeting or workshop because my pain is a bit worse than usual. It’s okay to be a trouper, at least some of the time.

But, as we overcome physical limitations to be present, let’s do so with the awareness that staying home is a valid choice, too. Let’s acknowledge there will always be those who abuse the system, without demanding that everyone lose out because of a few bad apples. Let’s stop expecting people to be impressed by a sparkling attendance record. Let’s shift our focus to performance and productivity.

Oh, and let’s take a crack at conquering that sick day guilt. Health is not a sign of strength, and illness is not a sign of weakness.

Counting My Spoons: A Life Lived in Pain

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It’s easy to be philosophical about blindness. I don’t have to stretch much to say it’s opened doors I never would have discovered if I were sighted. Blindness has compelled me to meet interesting people, acquire specialized skills, and develop a readily adaptable spirit. It’s not always fun—not even mostly—but it’s not without its upsides.

I am not philosophical about the chronic pain I’ve lived with for almost ten years. A decade of tension pain and migraines has weathered and exhausted me in ways I’m still attempting to put into words. If blindness is like the common cold, interfering with everyday life but easy enough to accommodate, chronic pain is like the flu. Just when you think you’re finally feeling strong enough to conquer your to-do list, or socialize with friends, or get some writing done, it sweeps over you, leaving you in a nauseated heap. At that point, there’s nothing for it but to slink off to bed, cancelling plans and sowing disappointment as you go.

Often enough, I can hack it. How else would I manage to hold down a job and maintain some semblance of a life? On most days, I grit my teeth, slather on the peppermint oil, and plaster on my smile. I carry tissues for when my eyes water with the pain, and can occasionally be found slumped over my desk with my head in my hands, but I can usually be depended upon to seem healthy and energetic.

Usually.

If you’ve ever spent any length of time with me in person, there’s an excellent chance I was fighting pain. If you’ve tried to arrange a phone call or coffee date with me, I’ve probably pulled out at the very last minute. If you’ve worked with me, you’ve seen me press my fingers into my forehead when I think you’re not looking. If you ask, I’ll say I’m fine. Most of you know I’m full of it, but it would be far too awkward to pursue the matter.

Loved ones have received text messages like “I’m not in pain today!” People who know me well have seen me cry, throw up, or lash out when my headaches are stronger than my resolve to seem normal. Managers have heard a dozen variations of “I need to leave early,” or “I need to sit quietly in this corner until this backs off.” On the very worst days, they get “I’m sorry. I tried, but I can’t come in today.” Housemates and partners have sent me back to bed after I’ve insisted I’ll be okay. Each time feels like a battle I’ve lost.

My fiancé deals with the brunt of it. No part of our relationship is untouched by the unpredictable whims of a body in pain. Dates are postponed, and postponed again, and eventually forgotten altogether. Dinners are skipped because my migraine has sapped me of my hunger. Harsh words escape because while my control is exceptional, it is not perfect, and pain makes me feel as defensive as a wounded animal. Domestic duties are shirked, and I watch guiltily from bed as he sorts laundry I am too sore to hang because I can’t reach above my own head. Many a time, he has cooked, cleaned, and run errands while I cuddle my heat wrap and take enough Excedrin to make an elephant tremble. I interrupt intimate moments, rolling away to hide angry tears; I am too tired, too sore, too weak to participate. Through it all, he is incredibly understanding, but the inequality is its own kind of pain.

And then there are the good days: days when I’m thrumming with energy, ready for anything. During these rare days, sandwiched between “okay” and “terrible,” I sing, clean, write, and tackle all the tasks I’ve left undone. I squeeze every moment of life I can into these precious pain-free days, balancing my enjoyment of the freedom with the knowledge that it never, ever lasts. My good days fool everyone into believing I’m all right. Unlike me, they still have faith that it’ll stay that way.

The crash, after a string of good days, is the worst.

I count my spoons with care, trying to account for the unpredictable. Do I spend this “good day” doing housework or writing? If I only have the energy for one social gathering, but I’ve booked two, which should I cancel? Which friend would I rather upset? Whose disappointment is easier to bear? Which task can I afford to push back? Since work is normally my top priority, and getting through it each day is costly, what should I do with the few hours before bed?

Know this, dear reader: my heart is so much bigger than my energy. My desire to connect with you, return your email, meet you for lunch, text you when you’re lonely, help with your creative project, is infinite. My ability to fulfill that desire is decidedly finite. If I’ve missed your call, cancelled our plans, failed to meet your deadline, ruined your good time with my exhaustion—I am truly sorry. I want to do better. If I had enough spoons to make everyone happy, I’d use them, because all my friends and all my family members and all others who depend on me are worthy.

So I ask everyone I’ve hurt, everyone I’ve disappointed, everyone I’ve let down: forgive me. I am getting better at this pain thing, but I am still learning. I don’t always distribute my spoons wisely. I overestimate my strength and overbook myself. I make promises I fully intend to keep, and need more time than I thought because work and basic housekeeping and mere survival take precedence. On good days, I sometimes forget to be careful, and pay for it on bad days. And, readers, I know you’ve paid for it, too.

No, I’m not philosophical about pain. I can never pretend it opens doors, or enhances empathy, or makes my world a richer place. Mostly, it just makes every little thing I do harder and more complicated. It turns an organized, driven person into an unwilling canceller of plans. I’m nothing if not adaptable, though—thanks blindness—and I’m slowly learning to count those spoons. I’m learning strategies to keep the pain from taking over my life. I’m becoming more accurate in measuring my energy levels and prioritizing what really matters.

In the meantime, I ask for patience, not only for myself, but for everyone you know who lives a life in pain. No, we’re not always fine, and no, we can’t always tackle what needs tackling.

But we love you. We’re trying. We’re playing the worst of all juggling games, and we are so, so tired.

But by God, we’re trying.

 

Let’s Get This Over With: A Love Story

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One year ago today, I met a new friend for a casual evening of food and conversation. We had exchanged several text messages and met a couple of times, but we didn’t know each other very well at all. I assumed him to be a stand-up guy—we had a few mutual friends who vouched for him—but that’s all I knew. When asked by friends and family whether this outing was a date, I protested that I was still grieving over the devastating dissolution of a 4.5-year relationship (absolutely true) and was in no state to be dating anyone, much less a mere acquaintance. As the evening progressed, however, and an innocuous meal turned into an entirely too romantic walk along the river valley (the sun was setting, the atmosphere was intoxicating, we didn’t really have a choice in the matter), I realized, quite abruptly, that this was, indeed, a date.
Uh-oh.
Faced with the prospect of opening myself to a new person so soon after being mistreated by someone else, I began to panic. I couldn’t possibly be ready for this! I had so many problems! My mental health was at one of its lowest points, and that’s saying something. I was perpetually exhausted, (I had new-job syndrome), and was nursing emotional wounds that are still healing. My moods were unpredictable. My emotional landscape felt jagged and chaotic. Most days, it seemed as though I was being held together by threads so frayed and fragile they’d snap at the slightest provocation. I was an undeniable mess—not an appealing or interesting mess, the way a million colours scribbled on a page can be beautiful in their own nonsensical way. No, I was more like the mess you shove hastily into your closet when company comes knocking—the kind you pretend doesn’t exist and continually refuse to sort out because it’s too daunting. If you opened that closet door, you know everything would come tumbling out.
That, dear reader, was the version of me trying to decide whether I was prepared to pursue a new relationship.
Certain that I had stumbled into a misunderstanding and determined to set the record straight, I did what any sensible gal would do on a first date: I sat down on this near-stranger’s couch—and an attractive stranger he was, too—and told him everything that made me undatable.
Yes, that was my first-date strategy: reveal every conceivable shortcoming, cover every awkward topic, explore every taboo, and excavate any past mistakes that would disqualify me as a suitable girlfriend. Lay it all out, get the unpleasantness out of the way, and he’ll balk, right? Surely telling him all about my multiple disabilities, my mental illness, my dubious track record with romantic relationships, my spectacularly poor choices, my insecurities, my unwillingness to ever have children, my overwhelming fear of failure—all of these would definitely scare him off, yes? In the name of honesty, I dredged up everything I could think of that would make him retract his interest so I wouldn’t have to deal with big, scary decisions.
In short, I handed him every reason he’d ever need to call it quits before we’d even begun … as one does.
Those of you who don’t know me very well may think you know where this is going. He was caught off guard, improvised some polite and sympathetic response, and led me gently to his door. When a woman implies, without an ounce of subtlety, that she is a disaster on legs, just thank the universe she’s not wasting more of your time.
Those of you who do know me realize that’s not quite how it happened. Instead, he sat quietly and listened while I gave him my spiel. He asked a few respectful questions, provided the odd empathetic comment here and there, and waited patiently until I was finished.
“So…okay…I’m sorry I dumped all this on you, but I really need to know. I need to know if you can handle all my … stuff. Otherwise, there’s just no point. Anyone I’m with has to be okay with my disabled, chronically ill, foolish self.” (For those of you fuming at my excessively self-deprecating portrayal of disability and chronic illness…just hang on. I’m getting to that.)
“Yeah. Of course. I think it’s great that you told me all this now. It’s brave to tell me, and it’s good information to know.”
As it turns out, not only did this remarkable creature have a disability of his own (moderate and mostly invisible), he was happy to explore romance with someone who had a handful of fairly serious problems, as long as I was willing to be honest about them. Exposing everything in one go, on day one, had the opposite effect you might imagine. Far from deterring him, it encouraged him to trust me and seemed to make me even more attractive to him. With everything on the table from the get-go—and yes, for those wondering, he did reciprocate by telling me many of his own struggles that night—we went into our tenuous relationship knowing there would be few surprises and no unnecessary anxiety about whether we were putting on a good face for each other.
Naturally, there were some who were horrified by what I’d chosen to do.
“You talked about all that stuff on the first date? Were you actually trying to scare him away?”
“Well…yes.”
On the other hand, many others were pleased to hear that my impulsive strategy had worked, and a few even confessed they’d like to try it for themselves, perhaps more gracefully than I had, but with the same unflinching sincerity.
“It would be kind of nice,” some said, “not to have to worry about them ‘finding things out.’” The slow reveal, especially with invisible disabilities and mental illness, can be even scarier than spilling it all out at once.
There was another latent benefit to depositing my life story into the lap of someone loving and respectful: I was reminded, once again, that my disabilities, illness, and various other attributes don’t make me undatable. They may present significant challenges, but they are not objects of shame, ridicule, or guilt. Choosing to date me even with full knowledge of my broad range of atypical challenges was an act of faith, perhaps, but never of charity. My partner wasn’t doing me a favour by agreeing to “handle” these things. I wasn’t “undatable,” and never have been.
Today, as I celebrate my first anniversary with a partner I have come to respect and adore, I appreciate the many ways in which our story could have veered into much darker territory. He could have been repulsed by what I’d disclosed. He could have promised he would handle it and realized that wasn’t a promise he could keep. He could have used the sensitive information I gave him to do me harm. Any number of catastrophes could have resulted from the way I handled our first date. Reeling from exhaustion and pain, I wasn’t in the most stable state of mind, and I fully acknowledge that if I’d been in a better place emotionally, I may have dealt with this differently.
All this has taught me that the recipe for a healthy relationship requires trust and forthrightness from the very beginning. Even if you don’t present your prospective partners with bulleted lists of all your issues—and I don’t generally recommend that you do—it’s essential that you feel comfortable around a person you’re planning to date. Romantic relationships place us in vulnerable positions, and if you don’t think your partner could handle how ill you get during migraines, or how much help you need when trying to identify objects you can’t see, you should keep looking. In the meantime, remember that while there may be many people out there who aren’t right for you, you deserve to find someone who is.