family

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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Life Ain’t Easy (For a Disabled Person’s Sibling)

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If you’ve been fortunate enough to grow up with siblings, you know how much they matter. Whether we are plotting their imminent deaths or singing their praises, they’re always present in our lives and, if you’re lucky like me, poised to pick up the pieces when life shatters us.
People overlook the fact that, while having a disability makes for a tough life, being a disabled person’s sibling comes with its own challenges. Inspired by my own sister, I give you just a few of the many reasons we should all thank our siblings

They often take the back seat: Parents and families tend to lavish a lot of attention on us, whether we appreciate it or not. It’s usually because we need more assistance and support. My parents didn’t have to fight for my sighted sister’s right to an equal education. Still, siblings are so often shunted to the side, even when they could use a little support of their own. The admirable bit is that they rarely complain. It’s just the way it is, and they understand that.

They are irrevocably connected to us: Anyone who knew me back home immediately connected me with my disability, at least initially, and my sister couldn’t escape the association, either. Being the older sibling helped her establish her own identity outside of mine, but she was often asked whether she was “Meagan’s sister,” and quizzed about what it was like to have a blind person in the family. The situation is even worse for siblings of those with more severe disabilities, who rarely evade the harsh light of other people’s scrutiny. We mustn’t forget that they’re people, too, with individual roles beyond “sibling of disabled person.”

They become secondary parents: Blind people can sometimes avoid this, because we tend to be reasonably independent souls. Even so, siblings often take on part of our care, especially when are parents aren’t around. My sister drove me to countless engagements, helped me coordinate outfits, and ensured that I was getting along okay, just generally. She was asked to shoulder more responsibility than any sibling should, and she usually did so without complaint.

They are asked to work harder: while some families are more egalitarian than others, it often happened that my sister ended up with the bulk of the “difficult” chores. While I did the dishes, she went out and picked rocks, or mowed the lawn, or changed the oil on a vehicle. My family’s subtle aversion to tasking me with anything too hard prevented me from learning some concrete skills, and it also meant my sister often got the shaft where household responsibility was concerned. Mostly, she dealt with that dynamic gracefully, only occasionally giving into a (justified) rant or two.

They become fierce defenders: My sister is a nonconfrontational person, but mess with me and you’d better hope you’re not within glaring distance. As we strolled through the mall, being gawked at by strangers, my sister dispensed cheery waves and bright, toothy smiles with relentless determination. She’s shamed more than a few people into looking away guiltily, and she can’t bear to watch me being mistreated. I learned not to tell her about any bullying that went on in my life, lest it enrage her. I don’t need protecting, but it’s still comforting to know that someone will be angry on my behalf when I’ve been treated unfairly.

They grow up too fast: siblings of disabled people learn about sacrifice, hardship, injustice, and inequality very early on. My sister was presented with living proof that life is not often fair; that people sometimes get rare and incurable genetic diseases; and that the world is not kind to anyone with a disability. My sister also had to learn self-sacrifice early and often, sometimes missing out on something she wanted because I needed something else more. She had to settle for less time and attention. She even had to forego certain visual experiences because I’d be left out. These are things she’s forgiven me for, and they are things I still feel guilty about.

If this sounds like your sibling, send them a text, give them a call, or link them to this article. Seriously. Do it. Right now. I’ll wait.