suffering

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.

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.

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.

 

Singing up the Mountain

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There’s a piece of wisdom I’ve often heard, though I’ve never traced its origin:

In life, we’re all just hiking up the mountain. You can complain about how your feet are sore, or you can sing all the way up. Your choice.

I’m no champion of relentless positivity. I maintain that, for people whose brains are wired like mine, mantras and affirmations bring on more depression than inspiration. I don’t wear rose-coloured glasses well, and even my most indulgent friends remind me to watch my pessimistic streak.

Yet, the idea of life as a long, mandatory hike appeals to me. Some will have an easier time than others. Some will find the path to be wide and accommodating, designed for their every need and wish. Others, especially those who represent at least one minority, will find the hike more arduous. Perhaps the path is narrow and winding. Perhaps your equipment is in rough shape, and you don’t have the means to upgrade. Perhaps your way is obstructed by treacherous pebbles that will send you tumbling if you’re not careful. Perhaps it’s littered with concerned strangers telling you to turn back, choose a less ambitious path, or adjust your pace to a speed they consider more appropriate.

Whatever your mountain looks like, whichever obstacles you might encounter, only you can decide how best to climb it. You can take advantage of the wide, welcoming paths, never sparing a thought for those on more dangerous journeys. You might decide to stray from your comfortable stroll to shift a boulder or clear a trail for someone else. If, like me, your hike is rocky and unpredictable, you may want to contribute to a large-scale effort to make the hike safer and more equitable for everyone who is stuck on this mountain with you. (This mountain is yours. There is no right way–only your way.)

There is another choice to make, and as I experience one of the most trying periods of my life, I’m thinking more often than usual about this mountain of mine. There have been times—and I’m sure there will be more—when climbing felt natural and simple. Boulders were moved from my path by forces much stronger than me. Fellow hikers let me lean on their broad shoulders. The map was clear. I knew where I was going and how I’d get there.

At this moment, my landscape is much more uncertain, and I am tired. My feet are sore. My canteen is nearly empty, and my fellow hikers carry burdens even heavier than my own. I can’t hear myself think for the struggles around me, and my desire to broaden the path for others is tinged with despair at my own sad smallness.

But as I write this, as I contemplate a path that has never seemed less welcoming, I know that it’s time I started singing again.

My song might falter while I cling to jagged places. Tears and frustration might dampen its beauty. Sometimes, I’ll be making up the lyrics, or humming nonsensically, because damn it if I haven’t forgotten all the words.

But I don’t know of any other way to keep climbing.

So I’m gonna sing my way up this mountain. It won’t be pretty, but it will sustain me. It will have to do, because turning back? Giving up? Slowing my step to suit someone else’s comfort? These aren’t options—not for me.

Yes, we can still complain that our feet are sore, that we are tired, that we can’t read our maps. These admissions are valid and necessary. We will need to pause, rest, drink some water, lean on the nearest shoulder.

But whenever we can, wherever we can, let’s not forget to sing.

It’s All Relative

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As I’ve covered over and over, people treat blindness like a life sentence, complete with misery and woe. It’s not an easy life, there’s no doubt, but it’s not a sea of bitter suffering, either. The misconception that my life really is that burdensome, though, tends to dissuade people from sharing their own suffering with me, as though my disability renders their own struggles meaningless by comparison. Even those who are close to me, and know full well that my life is mostly happy, need occasional reminders that they are free to share their problems with me, no matter how minor they might seem next to mine. Just the other day, my sister was about to tell me about something that was troubling her, when she stopped mid-sentence: “I feel so guilty! My life’s so easy. You have it so much harder. What am I doing complaining?” I took that opportunity to reiterate that everyone’s situation is different, and that pain is relative.

We all have unique issues to deal with, and what might be an insufferable load to carry for one person is but a light affliction for others. A problematic work situation might bother me less than someone else because I’m so grateful just to have a job in the first place. Chronic pain, however, is a thorn in my side, while others handle it with grace and pluck.

I, like so many others, had to learn the hard way that those with the hardest lives are the most willing to listen to my own difficulties. They give the best advice, and often provide welcoming ears and broad shoulders. Since I am so well acquainted with trials and tribulations, the last thing I’d do is devalue someone else’s. I’d look with shame and scorn on someone who tried to use blindness—or any disability, really—as a way to dismiss and silence another’s feelings. No amount of personal pain should make light of another’s. It’s worth knowing our limits, and being candid when we cannot be there for someone else right at that moment, but we must keep life in perspective. We are here to support one another, after all, and insisting that my blindness, mental illness, and chronic pain somehow invalidate the complaints of others is not only ludicrous—it’s dangerous and supremely selfish.

So, if you ever find yourself shying away from unburdening yourself on my shoulder, remember that it’s all relative, and that my pain has nothing whatever to do with yours. All it ought to do is create deeper understanding between us, and it demands that I show the same compassion as others have shown to me. Unburden away!