If you’re one of the, oh, half-dozen people who read my posts, you’ll know that mostly I do book reviews, with the occasional bout of self-promotion for my own works. And I’ll still be doing that, but it occurred to me that I am currently in the middle of a real-life experience full of drama and excitement, and other people might find it interesting. So I thought I’d blog about it.
Please note the phrase “currently in the middle of it.” I don’t know how it’s going to end, and I don’t even have an official diagnosis yet. What I do know is that three years and three weeks ago (this is not something that just crept up on me unawares–I remember the day and the hour with painful clarity) something suddenly became terribly, catastrophically wrong with my body. There have been periods of improvement, followed by periods of relapse. In retrospect, I can see what looks like a pattern of remission and relapse going back to my teens. Many tests have been done, and nothing has been found, which is one of the many reasons I suspect my problem is Chronic Fatigue Syndrome, aka Post-Viral Syndrome, aka ME, aka…what are its other names? There are so many. Perhaps in the course of things some other problem will be discovered. My fantasy is that it will turn out to be, say, a Russian strain of Lyme Disease, and I will be given doxycycline and suddenly be cured. But that doesn’t seem very likely at the moment. So in the meantime, to pass the time and perhaps share my experience with others who might be going through the same thing, I thought I’d do what I do about most things, and write about it.
So to start, here’s the picture I often use as my author photo:
It was taken a little over 6 years ago, in the summer of 2010. I’d like to think I look more or less the same now, only rather more haggard and out of shape. It was taken during what I now think was a period of remission, triggered in part by my visits to Finland in grad school. This was my second trip, and in a week between classes (I was taking intensive Finnish classes that summer) my mother and one of my brothers came over, and we went up to northern Lapland and went backpacking. Because that was the kind of thing I used to do. When this picture was taken, we had just completed a 24-hour train/bus journey from Tampere in southern Finland to Kilpisjärvi, several hundred miles north of the Arctic Circle. As soon as we got to our cabin there, we dropped off our packs and set off for the top of Saana Fell, a magical (according to the local Saami people) mountain overlooking the village of Kilpisjärvi. We thought it would be a short jaunt, but it turned into a multi-hour schlepp up hundreds and hundreds of steps. This is me standing on the summit shortly before midnight. The next day we did an 8-mile hike to get supplies at the nearest store (I “hit the wall” from dehydration and sleep deprivation about three miles from home, but made it back anyway), and the next day my mother and I set off on a five-day backpacking trip to Halti, the highest point in Finland.
Here I am at the summit of Halti:
The first day out we did approximately 16 miles over heavy terrain, with what for us were fully loaded packs–my mother likes to pack light, which allowed us to cover about twice as much ground per day as most of the other people out on that particular trail.
Here I am with my pack covering what was pretty standard terrain for the hike:
The point of this whole story (other than to encourage people to go hiking in Finnish Lapland, which is totally awesome!) is to give a little background about the kinds of activities I considered to be normal and fun when I was feeling comparatively good. My base state has always been one of extremely high energy. While not particularly gifted in gymnastics, short-distance running, or the other sorts of sports that my friends did, as a child I was pretty much crazy with energy, spending hours and hours every day (I was homeschooled, so I had a lot more time than most kids) playing, biking, horseback riding, jumping on the trampoline, dancing, and generally burning off all the excess energy that would accumulate. Given a choice, I would run from place to place rather than walk, and I constantly had to be in motion. As I got older I shot up suddenly in height, which weakened me considerably, but I was still able to work all day in the stable, and between the ages of 12 and 14 I competed in several competitive trail rides and endurance races, covering 30-50 miles a day.
But still, it was about then that something began to go wrong. I started having sudden attacks of weakness, along with a deep persistent feeling of tiredness that I couldn’t seem to shake. I would have fantasies about just collapsing onto the ground, which had a magnetic attraction for me, and never getting up. I still maintained my former level of activity, but something felt “off” and I couldn’t fix it.
The summer I turned 14 I went to the Pony Club East Coast Championships, representing the Midsouth Region in Knowdown. This was not physically exhausting–Knowdown is a test of knowledge, not athletic skill–but it was highly stressful and I didn’t eat properly the entire time. When I came back home I felt on the verge of collapse, and my arms ached strangely for days and developed inexplicable bruises.
That winter we moved to Russia (a whole other story), where I left off horseback riding for ice skating and backcountry cross-country skiing.
Here I am with my brothers skiing across the frozen Oka River:
But the tiredness was still there, so that sometimes climbing the stairs to our second-story apartment would leave me so weak that once I got to the door I would lean against it and rest before opening it. And my throat hurt all the time, and I developed a strange, painful, whole-body twitch that would attack me when I wasn’t expecting it.
When I was sixteen I moved back to the US to start college. That was when, thinking back on it, I developed my first full-blown episode.
Until next time…