The “Right Thing” Is Hard to Do: Cancelling Plans, Looking Forward

One of the feelings I hate most is the one that keeps nagging at you when you’ve made a plan that you know that you shouldn’t keep but don’t want to cancel given that doing so would entail conceding that you’re not as recovered as you’d like to think that you are.

As a purely hypothetical/very personal example: suppose you’re desperate to get out of the city since you’ve been cooped up at home for a couple of months after being discharged from the hospital, and so you arrange to see dear family friends approx. two hours away for the weekend. Everything is in place. All you need to do is pack a bag with the essentials and hit the road (well, allow others to transport you to your destination).

But, as often seems to be the case when an active seizure disorder and a recent brain injury are involved, life proves to be a little messier than the mental picture that it’s possible to create when ignoring important variables in the name of “c’mon, just lemme me push beyond my limitations, no matter what the consequences, just this once”: a preschooler’s fingerpainting as compared to a Vermeer.

OK, I might as well go ahead and admit that the smeary canvas of reality in this weird metaphor belongs to me. (Duh.)

When initially making the abovementioned plans, I sincerely thought that they were a Good Idea. These friends are sincerely among the nicest, most supportive, understanding people on the planet, and they (unfortunately) have had a brain injury in the family, which made both my husband and I feel more comfortable having this be my first experiment sleeping away from home post–brain surgery, post–brain injury. Alas: as this past week progressed, it became increasingly evident that I’m simply not ready to venture so far afield. Though I’ve made great progress since being discharged from my second 2017 hospitalization in early March, I still have episodes of confusion and wandering, my seizures aren’t controlled, I can’t concentrate or focus for extended periods, my words frequently don’t flow as I expect them to, and I’m much more tired and require more rest than used to be the case. Furthermore, we’ve put a system in place in our apartment to deal with current safety issues, and in recent days, it’s come in handy more times than I’d care to recount. Suffice it to say that I’m thus not sure it’d be wise to test what’d happen if I were somewhere without an Amazon-Baby gate (a gate for an Amazon (i.e, weirdly tall) Baby, not a baby gate from, in case the hyphen didn’t clarify that for you) and a door alarm. #seizuresafety

The little white box on the bottom edge of our extra-tall baby gate is an alarm that plays a funeral hymn—the fact that it’s entitled “Going Home” is probably confusing for Postictal Me, who, disoriented after seizures, often tries to leave.

Further complicating my final decision to do the “right thing” was that I’ve had some major FOMO (Fear Of Missing Out, for those of you who aren’t up on the internet-y acronyms of several years ago) as of late, based in large part on the fact that I’m almost constantly and objectively Missing Out. While, yes, this reality made it especially difficult to postpone my weekend trip, next week is going to be intense by my current standards, and it doesn’t make sense to go into it already tired. It also doesn’t make sense to push myself just to prove something when I could enjoy the jaunt more with a slightly more recovered brain, though pushing myself when it doesn’t make sense happens to be one of my specialities.

Perhaps I can try mentally reframing this, telling myself that now I have something to look forward to (weekend trip has been tentatively reschedule for a little over a month from now) and a personal victory in which to bask. Before I halfheartedly make an attempt to see this positively, however, an effort I plan on fuelling with ice cream and chocolate, I’ll allow myself to sulk for a bit. ‘Cause you know what? Brain injuries suck. Epilepsy sucks. Door alarms that play funeral hymns (true story) overly loudly on baby gates when I try to escape in the middle of the night suck.



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