migraines

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.

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Thin and in Control

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It seems odd to think about it now, given my rocky relationship with food over the past five years, but at one time, I was known for being particularly thin. People told me to eat more—when they weren’t praising my asceticism, of course. Women sighed bitterly whenever I ate anything more nourishing than a celery stick. Everyone around me seemed to vacillate between worrying about my health and telling me I looked amazing. My then-boyfriend ran his hand over my ribs, marvelling (worrying?) that he could count them without effort.
Throughout my time in university, as I grew steadily thinner, I fielded a befuddling mixture of genuine concern and envy-tinged adulation. And time after time, I was asked just how I did it. I wasn’t a faithful gym-goer, nor a diligent meal planner; and, as my family members lamented, my genetics weren’t favourable enough to make thinness a given. How on earth was I pulling this off, with my careless diet and nonexistent fitness regimen?
I met these questions with vague references to “being careful” and “trying to be disciplined.” I went no further, and nobody questioned me because, as research has shown us, thin people are assumed to be more competent and more disciplined than people of size. It didn’t add up, and there was nothing about my life to envy or emulate, but even those who knew me well perceived me as deserving of my slender shape. I didn’t work especially hard to disabuse them of that notion.
Meanwhile, my ‘secret’ to long-lasting slimness was a good deal less glamourous, and far less controlled, than you might imagine. The short version is this: I have chronic illness, severe stress, and disability-related isolation to thank for my thinness, and nothing more. One need not run marathons, nor fast for days, nor down diet pills to get skinny. One need only be too sick to eat, too stressed to care, and too isolated to ask for help.
Not magazine-worthy, I know. Harsh truths rarely are.
As I’m sure you’ll agree, it would have been painfully awkward to divulge the desperation behind the scale’s gratifying announcements that I was 125, 120, 115 pounds. It would have been unspeakably strange if I’d admitted that if you want to follow in my footsteps, it will involve a lot of migraines and exhaustion and terrible orientation and mobility skills that keep you from buying your own groceries. It would have been a real buzzkill if I’d said, point blank, “I stay thin because I throw up a lot from the horrible headaches I get three times a week, and I’m too depressed to eat anyway.” Weird, right? Not appropriate lecture hall chatter, and awfully distressing for the poor soul who just wanted to say something nice.
So, people figured I was very good at health management. I let them go on thinking that, even as I waited too many weeks between grocery runs because my blindness skills were atrocious and I couldn’t find the nearest store; even as the migraines got so bad I started having blackouts; even as I lost so much weight it stopped being sexy and started being worrisome.
The alarming thing is, even those who knew something of what was happening to me didn’t probe much, because thin people are in control. Thin people are healthy. Thin people have got this.
Depression had killed my appetite, and migraines had knocked it even further off balance. But my jeans fit like a glove, so all looked well.
As I write, I can say with confidence that I am the healthiest I’ve ever been, even though I’m carrying several more pounds than I did then. My migraines are much less frequent, and they no longer come bundled with stroke symptoms and paralyzing fear. I’m eating regularly and for the most part, nutritiously—no more living on crackers for a week and a half (yes, that’s literal). My mental health is reasonably well-managed, I’m strong enough to work out regularly, and I’m as functional as I’ve ever been.
These days, more or less, I am in control. I am healthy. I am disciplined. I’m not quite so thin anymore, but I’ve got this.
So next time you’re tempted to ask someone how they do it, spare a thought for what might lurk behind that pleasing body shape. It may be good genetics or solid habits, but it also might be a whole lot of misery they’re not ready to talk about.
And next time you’re tempted to work toward being smaller, taking up less space, ask yourself: Will I be healthier? Happier? Stronger? More in control?
In Sara Groves’ Finite, one of the best songs out there about human insecurity, she encapsulates the treadmill-like futility of fighting to stay “younger, thin and in control.” She wonders “where the peace went?”
From what little I’ve known of the journey toward a healthier life, that peace doesn’t come from your scale or tape measure or your friends’ envious validation.
Take it from someone who has been small, and lived small, too: Whatever your size, it comes from eating well, moving when you can, and never being too afraid to ask for help.
You are finite. You are exhaustible. And there’s a lot of peace in that.

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.