Chronic Christmas

Get ready for some hardcore reflection, y’all.

We’ve been in NC with my in-laws since Thursday evening, having flown down for the holidays. I’d like to emphasize before continuing that I’m genuinely happy to be here. Besides a harrowing customs experience (to which I’ll return in a future post) involving the one US CBP officer with a sense of humour, the trip went smoothly. We did some errands and relaxed on Friday, and Saturday afternoon, we attended to a lovely Christmas lunch with extended family we hadn’t seen in a while. Yesterday we went to Trader Joe’s (like Christmas in itself for us Trader Joe’s–deprived Canadians) and enjoyed more family time. It’s been, in most regards, pretty darn nice.

And yet I’m a bundle of nerves, on edge, waiting for something to happen.

In the back of my head, I’ve always operated with the assumption that my family is afflicted by a Christmas curse. Collectively, we’ve had several major health crises coinciding with the Christmas holidays, ranging from my father’s week-or-so hospitalization for a bacterial infection, which began in the wee hours of Christmas morning when I was around ten, to my hospitalization last year. Though I used to be able to convince myself that I was being ridiculous, now that this preexisting sense of festive foreboding has been added to an out-of-control anxiety disorder and epilepsy, which brings with it the knowledge that a seizure could strike at any given moment, the result is seasonal anticipation of something vague but terrible.

Seems I've been pretty apathetic about the whole Christmas thing since a young age.
Apparently I’ve been pretty apathetic about the whole Christmas thing since a young age.

I know that I’m not alone in my less-than-cheerful attitude toward the holidays, and I realize that I should be grateful for what I have, first and foremost loved ones with whom to celebrate. And I am. Really. But I think it’s important to acknowledge that problems, mine and those of others, don’t magically disappear when the tree is decorated or when the turkey goes in the oven. What I’m referring to in particular here is that children and adults who live with one or more chronic illness(es) must continue to manage their condition(s) and deal with their symptoms, whatever they may be, on Christmas/Chanukah/Kwanzaa/Festivus/etc. Personally, I’ve learned the hard way that epilepsy (and depression and anxiety and OCD, for that matter) doesn’t take vacation days.

This isn’t to suggest that the holidays should be ignored or that how they’re commemorated should be changed in any significant way. It’s only to state the obvious: that different people experience them differently in accordance with their particular situation. Having to make practical considerations and/or noticing “abnormal” feelings—will I have a seizure while opening presents or during Christmas dinner? Will I get enough rest? Will I be too tired to fully participate? Why am I sad when I’m “supposed” to be happy?—are reminders of one’s alterity during what society tells us should be a purely joyful celebration.

I’m sure(?) that many people with a chronic illness can completely let go and enjoy the festivities (without, of course, neglecting their medical needs), and there are many aspects of them that I treasure. It’s hard, though, to ever completely relax and trust that things will be ok, whether the day is seizureless or whether I have a huge embarrassing seizure and ruin Christmas for everyone (there’s some good old-fashioned catastrophic thinking for you) but live through it, and for whatever reason, the holidays really bring that home for me.

So my goal, this Christmas, is to live in the moment as much as possible, to practice good self care, to enjoy the time I spend with family, and probably hardest for me, and echoing how I closed my last entry, to be gentle with myself even if things don’t go as planned.

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