How our world has gotten smaller

Photo of Devin standing with their back to the camera, hands on hips, looking across a grassy meadow towards the high-rise apartment buildings on the other side of a park. Taken in June 2021, before symptoms started.

The other day I was talking to a student about all the travel I had hoped we would do within Mongolia, living here for three years. First, we were mentioning places we’d been, and I realized everything I was talking about was from our first stay here, four years ago. Then I was talking about everywhere I’d like to go, and realizing it may just not happen. I mean, we haven’t even been to the Gobi yet, and I’d really love to go there. I’d like to go back to Lake Khovsgul when it isn’t raining, and actually see the lake. I’d also like to see more of the mountains in western Mongolia, around Khovd and that area. And so many other places here.

There are some practical reasons for this. Devin and I both have a lot more work than we did four years ago. There’s a big difference between 7th grade and 11th grade, in Devin’s case, and their school is pretty ridiculous in terms of workload (and many other things; my deepest regret about moving back to Mongolia is that school). Also, I got a promotion, so my workload has at least doubled with all the administrative stuff I do, and I’m still teaching three courses a semester (down from last year’s four, at least). And the university keeps finding new ways to shift work from administrative staff to faculty (for example, my program no longer has a dedicated administrative secretary, and the secretary I have access to works on two other programs, so I end up doing a lot of that kind of work, too). So it’s simply harder for us to get away for a weekend, even, because we are both working weekends.

We also have the dogs with us, which makes it harder to get away as well because I have to find care for them. There is a dogsitter who will come to people’s homes, but it’s only once a day, and our guys are used to having more human company than that, so I feel bad. Still, they survived the three weeks we were away on our trip to India, and for a weekend it would be just fine. We also have someone who will take them to her home out in Gachurt (a small town outside of Ulaanbaatar), and that works really well, especially since she picks up and drops off. I’ve also had the idea of traveling with our dogs (not in winter, though), since people do that here. So it’s not as much of an issue as the workload, but it’s still one more thing to think about during a time when one more thing can seem impossible.

But the real issue, as I’ve written about in other posts, is the chronic illness that Devin’s been living with for a year and a half now. We’re still in the process of figuring out how it affects their life in nearly every way. (There might be some things it doesn’t affect, but we’re figuring that out, too.) One of the biggest effects is that Devin’s energy level is a lot lower than it used to be. The main thing they want to do in their free time, besides art, is rest. We don’t even get out and about in Ulaanbaatar as much as we used to. To be fair, I’m pretty exhausted, too, but there’s a lot in the city we still haven’t seen, and just walking around is so interesting that I’d love to do more of it. But walking long distances is hard for Devin. Even medium distances, and sometimes short distances can be too much. Their knees stop working, they start falling down, and they tire very easily. We still sometimes take the bus downtown, walk around a bit, and then walk home (about 3.5 or 4 kilometers, depending on where we’re coming from). And we had great plans to go to more museums and see more sights on the weekends. But so many things have gotten in the way of that.

This isn’t to say we don’t travel, obviously. Our trip to India over the winter break was a much anticipated and wonderful experience. And for Devin’s spring break (in about a week), we are going to Thailand. (I don’t have a spring break, but we’re going anyway.) But the main purpose of our travel now, honestly, is to get someplace warm for a little while. Which from the months of October to May is outside of Mongolia. Being in a warm climate and being able to do certain things like swimming really helps Devin’s condition and mood. It’s what they live for these days. I’m not sure what we’ll be able to do next year, given the absurd workload of the 12th grade (I suspect spring break won’t involve travel, at least), but whatever we do will be in warm places rather than more winter-time travels within Mongolia. It makes me a bit sad, but it’s our reality. And we are very fortunate to have the means and ability to get away for a bit.

And of course, we are limited by our school schedules, which restrict traveling to Devin’s three-week winter break, one-week spring break, and summer vacation. I had hoped that summers would allow us more time to travel within Mongolia, when it’s extremely beautiful here, and within the Central Asia region. There are some fantastic countries nearby that will be harder to get to when we’re no longer here, like Kazakhstan, Kyrgyzstan, and so on. And we wanted to go back to Japan and visit South Korea outside of the Seoul-Incheon airport. But last summer we ended up going back to the US to get Devin re-evaluated for their developmental conditions, and to see a doctor about their physical health, both of which were necessary. And this summer, we’re going back to the US for college tours. And the summer after that, we’ll be moving. So that’s taken care of our summers.

The main thing, though, is adjusting our expectations about what we can do. It sounds easy, but sometimes when we do manage to get out of the apartment for part of a Saturday, Devin ends up overextending and loses the next day recovering. This is something they can’t afford with their workload. It’s made them more cautious about how they spend their free time, which is sad to see but completely understandable. And honestly, rest is the most important thing they can do. They have started to have a few genuine friends at school, and the last couple of weekends they got together with those friends, which was a glimpse at “normal” teenage life for them. But it was also tiring. Conservation of energy has taken on a whole new meaning in our household.

So, our world has gotten much smaller in some ways. We’d both turned more inwards, anyway, as a result of our discoveries of being neurodivergent over two years ago. We haven’t stopped exploring, but the terrain has shifted. That’s not necessarily a bad thing. The inner terrain is vast and needs exploring. We’ve also become much closer as we navigate these new experiences of chronic illness, disability, and difference. And that means the world.

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