self-care

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.

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Cooking My Way Toward Confidence

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I’m not much of a cook. I’ll get that out of the way first and foremost. You’ll never catch me humblebragging about my culinary adventures, and my best recipes come from Google. I’m far better at googling than I will ever be at cooking. In fact, part of the reason I fell so immediately, intensely in love with my better half was that the man could cook, and I was in desperate need of a healthier relationship with food. Fiercely independent as I was, I was ready to let someone feed me, and he did so with relish.

I have a tower of excuses for my abysmal cooking abilities. I don’t have the time (I often do), or the spoons (I sometimes do), or the know-how (which I could probably learn if I applied myself, let’s be honest).
The real story is a lot less sympathetic. Simply put, cooking is scary for a blind person who lacks confidence during hands-on tasks, and I’m one of them. I’ll write you a set of speaking notes in less than an hour, for an event I’ve never heard of, on a topic I know nothing about. That’s juuust fine. But please don’t ask me to do anything with my hands other than write, play the piano, and carry your stuff.

“But Meagan,” you insist, “surely you’re overthinking this! It’s not that complicated.” (You’re right. Congratulations.) Special training is not strictly necessary, and the majority of blind cooks I know are at least partially self-taught. It’s tricky, but it’s not arcane.

And yet, the chronic diffidence persists, and it didn’t originate with me. For as long as I can remember, sighted people have been all too happy to enumerate the disasters that might befall me. Knives can’t wait to chop off those precious fingers that help me read and use my cane. Boiling hot liquids are just waiting to terrorize me with much spattering and spilling. Grease fires lurk around every corner, poised to consume unsuspecting paper towels. Measuring is messy. Preparing dishes without visual input is imprecise. Whatever I make probably won’t be perfect. (The horror!)

And so, being someone who fears messes almost as acutely as I fear failure, I stayed out of the kitchen unless compelled to do otherwise. The years I lived alone meant I subsisted on an insipid rotation of frozen dinners, canned soup, and snack foods that lacked nutritional value but quieted my hunger. Every now and again, when I wasn’t busy studying or writing papers in a feverish haze, I’d throw together a salad or heap a random assemblage of ingredients in my slow cooker and hope for the best. My standards were low and I was frequently too ill to eat at all, so this worked for me … for a while.

Once I started working full time and transitioning to “real” adulting, I began longing for more in nearly every facet of my life. I wanted to travel more, socialize more, and acquire the grownup skills I thought I ought to have picked up years ago. My student days were marked by severe migraines and appetite-killing pain, and I was mostly too ill to notice I was living a small, sad existence. Now that I was blossoming, really learning to thrive, I felt I should take the act of cooking more seriously—for my health, if for no other reason. And there they were, my faithful, time-worn excuses.

But this time, there was a new element: my afore-mentioned better half. He didn’t have a lot of time or energy, either, but when he did, he’d prepare delicious meals for me and, eventually, for our friends. Nothing made me prouder than a group of my loved ones sitting at our kitchen table, exclaiming over his prodigious talent. There was immense satisfaction in the act of nurturing people, of bringing them together through the medium of food. An ongoing source of suffering in my life has been the perception that I have nothing to offer. No one needs me, I can’t be counted upon, and I will never make others feel cared and provided for in the ways so many have done for me. It’s a common and heartbreaking reality of disability, which very few of us escape entirely.

But bearing witness to the magic my partner could call forth by simply whipping up a meal and inviting people to our table made me question those long-held assumptions about myself. Perhaps I really was capable of nourishing others as they had so often nourished me. Watching him at work filled me with such an expansive, buzzy feeling of well-being that I decided it was time for me to be brave and turn these one-man meals into a team effort. I wanted to do more than stand on the sidelines of his generosity—a generosity I shared but couldn’t easily express. I wanted to help make it happen.

I’m still a bad cook. (What’s that? You thought this would be a story of radical transformation? Triumph over adversity? Sorry, wrong blog.) I’m not sure that will change, though experience will help me hide it better. What I do have is patience, inspiration, and determination to improve. I also have a partner who appreciates every contribution I make, whether it’s researching recipes or taking care of the food prep he finds unendurably dull. He knows I have a long way to go before I’m satisfied with my skill level, but he is happy to celebrate the baby steps between where I am now and where I want to be. The pure, unbridled joy he takes in those baby steps gives me the space and freedom to celebrate them, too.

With every meal we coordinate together, with every recipe we choose and every cozy conversation that plays out over our cutting boards, I feel my confidence building and, more and more now, a growing closeness not only with the partner I cook with, but the people I cook for. Showing love in words has always been easy, but showing that love with my hands was always an epic struggle. Now, with practice, I am learning to embrace the work of my clumsy, imperfect hands as a pathway to enhanced self-worth and a better relationship—with myself, my partner, and my loved ones.

The cherry on top of the sundae? I haven’t yet managed to chop off any fingers or start any grease fires. (I’ll just have to try harder.)

TLDR: If you’re looking for a way to bring more big buzzy waves of well-being into your life—and really, who isn’t—cook for yourself. Cook for the people you love. If you can, cook right alongside those people, even if the thought of others watching you work is uncomfortable.

Running low on spoons? Don’t have enough time in the day? Scared you’ll mess it up? Do as much or as little as you feel you can. I promise you that whether I do the heavy lifting for a meal or merely slice a carrot or two, the happy buzzy vibes show up either way. It’s the sense of competence and collaboration that matters, not the volume of work done or effort made. The benefits of cooking for yourself and others are endless, and you can’t go wrong with a little extra confidence now and again. I learned that the hard way, so you don’t have to.

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.

Staying Sane In A Culture Of Outrage

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Unless you’ve been living off the grid for the past year or so (and if you have, congratulations, you’re not really missing much), you’ve been inundated with rage-fuel from just about every imaginable quarter, at least on the internet. The tumultuous American election, the unrest in Europe, the conflicts in the Middle East—these have all snowballed to create feelings of despair and near-constant outrage. Sustaining these feelings for any length of time is mentally taxing, and I’ve seen this struggle in the disability community and, of course, in myself.
Shouldering my personal mental health issues has spurred me to devise strategies for staying sane in these troubled times. While everyone on and offline will have, I hope, found their own effective coping mechanisms, I thought it might be prudent to share some of my own. My goal is to help others, including those without disabilities, safeguard their sanity while continuing to be present online. It’s all very well to fight on the front lines, but we must remember to look after our well-being, no matter how guilty it makes us feel to do so. We’re no good to anyone or anything unless we care for ourselves, first and foremost.

Learn to Sit Down

If you’ve spoken about any issue on the internet, you’ve probably been told to “sit the f**k down” a time or two. It can be discouraging when people demand your silence, particularly if they claim to speak for and represent you, but they have a point.
One of the first things I had to accept when I worried for my mental health was that sometimes, I had to put down my torch and acknowledge that not every battle is mine to fight. I cannot possibly join every crusade, champion every cause, or address every issue, in the disability community and elsewhere. I’ve found that sticking to the conflicts that affect me most directly is the best way to ensure that my voice is heard and my views are based on accurate information and experience. There is no point getting involved in a dispute I know nothing about, and once I recognized this, my life got a whole lot calmer.
In addition to preserving my sanity, this tactic meant I didn’t inadvertently misrepresent or harm anyone else, whose opinions are much more valid than my own. What right have I to speak on behalf of those with autism? Wheelchair users? Those who are deaf and hard of hearing? None whatsoever, I’d say. I’m free to discuss their general rights as disabled human beings, but my personal experience is totally irrelevant in most cases. I’d be annoyed if someone with little or no experience with visual impairment presumed to override my needs, and I imagine others in the community feel the same way.
So, learn to sit down once in a while. It’s worth it, I promise.

Know your limits

The next thing I learned was that my capacity for absorbing rage-fuel is finite. You may have discovered the same. While some of us grow numb to it all, developing armour and forging ahead, others of us need mental health breaks. Stepping away from social media can be therapeutic in the extreme. More than once over the past year, I’ve had to unplug temporarily, just so I could function normally and live my offline life.
Here are some signs to watch for if you think you might need some time away:
• Your heart races at the very thought of reading yet another inflammatory article or Facebook post, but you can’t seem to stop clicking on them.
• You find yourself jumping into strangers’ conversations at the smallest offence, determined to set them straight.
• You pick fights with friends who disagree with you, despite the fact that it achieves little and only ends in resentment or awkwardness.
• You find yourself under constant stress, especially when surfing the web.
• You’re losing sleep over the opinions of strangers, even when those strangers are ill-informed and unworthy of your time or energy.
• You’re unable to concentrate on your job, your relationships, and other infinitely more important parts of your life.
If you’re encountering any of these issues, back away, at least for a few days. Your energy is precious, and if you’re anything like me, you can’t afford to waste spoons on fruitless anger. I can just about guarantee you’ll return to the fray feeling more tranquil, and the energy you do expend on the things you care about will yield better results. Try it.

Be Open to Changing Your Mind

Personal growth is underrated in this polarized landscape. If you’re on the left, you’re expected to stay there under all circumstances. If you’re on the right, the same is expected of you. No matter where you fall on the spectrum, people demand that you pick a side and remain there. Nuance is so often abandoned in favour of toeing the party line, and this can be enormously stressful.
Remember that your principles, while they’re admirable, are allowed to evolve over time. If you receive new information that proves you’re wrong about something, be at peace with changing your perspective and your position. You may consider some beliefs to be inviolate, I know I do, but flexibility is its own reward. Keeping your mind open—but not too open, you don’t want to be swayed by every breeze—is vital to your growth and development. My own views have shifted over the years, which is reflected in my blog, but I’m not ashamed of it. All it means is that I’m capable of adapting to what life teaches me.
If communities as a whole, and individuals in particular, are totally closed to change, they won’t survive for long.
Don’t let anyone accuse you of betrayal or flip-flopping. Adjusting your beliefs and values according to new information you gather is normal and healthy. Don’t let anyone convince you otherwise.

You Owe Nothing to Anyone

Finally, keep this close to your heart: you do not owe anyone anything. You are not duty-bound to educate. No one should try to force you to act on any given cause. Respecting your limits and beliefs should be your highest priority. It’s worthwhile to advocate, and I prefer that people choose the path to education if they insist that nondisabled people behave properly around them, but you should never feel as though you have to treat every situation as a teachable moment. If you try, you’ll find yourself exhausted and frustrated. You might even snap one day and bite some innocent person’s head off. This has happened to me, and I recognized it as a signal that I could not be a perfect educator at all times. On days when I just don’t have it in me, I need to go about my business and forget about perceived duties to my community.
Furthermore, you don’t owe anyone a debate or an explanation. If someone seeks an argument with you, by all means engage them, but end the conversation once you’ve had enough. There are many resources out there. Point them toward those and withdraw before you become unduly upset. Let no one tell you what you owe them.

I hope these tips will help you. If you can, please pass them along to anyone you know who might be staggering under the weight of all they are reading and sharing. Tempting as it may be to steep ourselves in this culture of outrage, we must learn to practice self-care and cultivate self-awareness. Only then can we find balance.
Good luck in all your noble endeavours. Do me one favour though, and rest now and again.