We’re supposed to be in NC at the beach right now with my husband’s side of the family for a relaxing week of relaxing: a break, surrounded by people we care about, in one of my favourite places on earth. We’d both been looking forward to it for weeks—months, even—and had been using it to get ourselves through tough moments in a way that I can in retrospect see made it inevitable that something would go wrong. Really anxious about a certain upcoming brain surgery? It’s ok, we have a trip to the beach to look forward to! More-hectic-than-usual workweek? At least there’s that upcoming beach trip! You get it.
You’ve probably guessed by now that we’re not at the beach and that I’m not.at.all.pleased. If so, you’re right on both counts. However, my emotions around the cancellation of my husband and my participation in Beach Trip 2016, a cancellation that occurred a bit more than a week ago, have been downgraded from “Near Devastation” to something a little less than that, a definite step in the right direction and due mostly to my parents’ willingness to step in and help us plan a great alternative for just seven days later.
But I guess I should backtrack.
So, what happened? The short answer is that the travel insurance we usually have when we go to the States, outside our haven of socialized medicine, is void because of my surgery, and I’m completely uninsurable because of said procedure. We tried everything we could to get coverage, including contacting an insurance broker who specializes in finding policies for people in “precarious health,” and would have paid basically whatever it took, but we were completely out of luck.
What made this especially difficult for me to deal with is that when I agreed to go ahead with the surgery, my husband emphasized how we’d make sure to have a fantastic summer and early fall, especially since there’ll be a significant recovery period. In terms of fun “pre-surgery distraction events,” the beach trip was presented as the main attraction, if you will.
And then, I had a not-so-great medication change that put me out of commission for a bit, meaning that our “summer of fun” turned, temporarily at least, into a “summer of seizures, frantic phone calls to my specialist, and a close call leading to an ER visit and near-hospitalization.” However, since I’ve returned to my pre-adjustment levels of Topamax, and with the addition of another AED, my brain’s calmed down to seizure levels that are lower than I’ve seen in a months, if not years.
I guess that the fact that I’m in such a neurologically “good” place now, relatively speaking, anyway, is part of why I was so upset that the reason that we ultimately couldn’t go to the beach was that I have a surgery scheduled. A surgery that’s technically elective. A surgery that I’m having, to put it mildly, mixed feelings about. It all feels so arbitrary, so unfair. I understand that it wouldn’t have been the most responsible of all ideas to travel without insurance, even if the chances of something catastrophic happening in a week out of the country are low, but I’m so, so tired of having epilepsy ruin things for me, and it was very, very difficult to accept that it was going to force us to give up a vacation that was supposed to be a reward for doing everything we could to make the best of the tough hand we’d been dealt over the last while.
So when it was, indeed, snatched away, it was almost too much to take. (Not to be dramatic or anything.)
But less than twenty-four hours after it became clear that we weren’t going to be able to go, my parents had booked a cottage on Prince Edward Island, where my father’s side of the family lives, and where it was decided we would meet them (a week later than our original trip was planned since it was much less expensive this way—the difference between $600 and at least $900 in change fees for our tickets alone, which is significant for us since I’m only freelancing at the moment while I wait for my surgery). Now that I’m past the worst of the initial disappointment, I’m really settling into the excitement of showing PEI to my husband, who’s never been there, of seeing my mom and dad, and of visiting relatives. It no longer feels like a consolation prize.
When I allow myself to think for too long about the beach trip we’re not taking at this very moment, though, tears inevitably well up in the corners of my eyes—and I’m usually a once-every-six-months kind of crier (unless I’m watching Now and Then or have overdone it on wasabi). It’s about what it represents: what epilepsy has taken away from me; what is deemed”ok” and “not ok” for me because I have seizures (mostly controlled or not); the implications of this decision to proceed with the surgery process.
At the same time, though, I need to remember that this whole ordeal has shown me that loved ones can, and do, come together to help find solutions just when it most feels like the world is one big Anti-People-with-Epilepsy conspiracy. And that, my friends, is a pretty darn valuable lesson.