I was diagnosed with M.S., around the time I turned fifty, and I don’t recall having any symptoms beforehand, but not long ago, I suddenly remembered what might have been the very first time I experienced an M.S. symptom, back when I was a kid. To be clear, I didn’t experience this symptom firsthand. To be even more clear: the symptom I might have experienced was that particular M.S. symptom that is, on the one hand, what I’d call a very prominent symptom – one that you hear and read a lot about – as well as being the symptom that is, in my experience as an adult with M.S., one of the most difficult to describe, to family and friends who may not have M.S., to anybody. And yes, I am talking about fatigue. How I remembered this experience was that I found an old newspaper clipping. It was in the back of a drawer, and when I unfolded it, I saw myself at the age of ten, posed with a dozen or so other ten-year-olds, the local paper’s headline: “Cub Scouts Go Camping.” The clip was about my very first camping trip. Whatthe newspaper did not mention was that after we camped that one night, I didn’t think my father was going to get up.
To call it a camping trip was too kind maybe; it was less like a rural excursion, more like a traveling baseball team without a motel. We drove a few hours into the hills around New York City, fathers and sons, to an old summer camp, and built a campfire, and slept on the gymnasium floor, all of us, in sleeping bags and, for the small number of fathers who clearly had done this before, cots. (One of them brought a hibachi too, to make himself a steak.) This would have been 1973, and we all lived in Queens, near JFK, and played baseball in the street, so this was among the greenest places we’d ever experienced. We were let loose to explore, with only one admonishment: don’t fall in the lake. I remember because I fell in the lake, and forever that had been my memory of the event until I found the old clipping the other day.
When I found the clipping, I was in one of those stretches where I need energy so badly, where I get so easily slowed down, where I grope to explain how I feel and why I perhaps seem cross – but then suddenly remember that word that doesn’t really work, fatigue. Fatigue the word comes from French and Latin roots that refer to a task that causes weariness, as in you’ve taken too much on, when in fact, in my experience, you can’t take enough on, or anything, even though you might want to. You are spent before you worked up the energy to spend. I wasn’t thinking about fatigue as it related to any camping trips, at least initially.
In looking at the clip I’d was remembering that camping trip: my fall in the lake (see me crossing from one floating dock to another, my legs scissoring wider, and feel the cold water, that slimy dead fish…) and the campfire, everyone having hot dogs, except for the one father who brought a small hibachi and some charcoal and cooked himself a steak, so impressing the other dads, and impressing me today. Sleeping bags were spread out across the floor of a large room, or maybe a small gymnasium, and we all went to sleep.
And then at dawn, everyone slowly woke up, the kids not so slowly – I don’t recall this but nonetheless have no doubt – and the adults more slowly, and that I do recall. All the adults, that is, except for one: a forty-eight-year-old male who, as I look back on the morning, hardly moves, who makes no sign of getting up, while everyone else makes all the signs and then slowly but surely manages to rise and shine, whispers at first turning to talking and loud laughs. The fathers begin to pack the cars.
Not my father, and I remember trying to stay outwardly low key, laughing it off as, come to think of it, we always did, making jokes about how dad liked to sleep really really late, cause when your dad isn’t getting up, what else are you going to do? I knew he wasn’t unconscious, or worse, and in a certain sense, nothing appeared to be wrong, and if everything else is blurred by time, this I see clearly from where I am now. The camping trip happened only a few years before he was diagnosed with M.S., though he was diagnosed, as opposed to me, before MRIs were prevalent. Doctors worked towards an M.S. diagnosis for my dad, and before they got there, suggested that he had suffered a stroke, or a series of small strokes. This was in answer to him reporting numb hands, and a tendency for his foot to act, in his words, as if it had a mind of its own, suddenly landing in that puddle just off the curb, despite no intention to do so on the part of the foot’s owner.
Fatigue sounds like you need a nap, which of course, when fatigue strikes, you would never turn down. But fatigue is something else, something more sinewy, something that is happening down in your musculature’s nuclear core, or your mitochondria’stransmission. Such a day, for me at least, is a day when everything feels not just uphill, but underwater, as if I am deep in apool, walking with weighted boots, and somebody accidentally set the pull of Earth’s gravity on very high. And perhaps the most complicated part of fatigue is that despite how hard it hits, despite the pull of its riptide, you look the same, or good even.This can lead to confusion on the part of friends and family and kids on a camping trip. In my own life, I could never convince a fair number of my relatives there was anything wrong with me, no matter that I could hardly shake their hand.
I suppose that after I found the camping trip clipping and remembered the trip, and thought of my dad, not getting up, then eventually finding a way to get up, then getting us home, I think first of the intimacy of that moment: me, seeing he was moving, finding his shoes, struggling but rising. I remember what that work meant to me, in terms of relief, in terms of care. Everything, as they say, was going to be alright.
But I also think of how my own M.S. has pressed itself against others, has maybe made people I love feel like a kid in a room of otherwise awake parents, even a half decade later, when I can take advantage of the incredible disease-modifying therapies that did not exist back then. And of course, I think of my wife, who after living with me for thirty-five years, knows the exact difference between me being tired and me being fatigued or, to use a most accurate term, deeply zonked. What do we ask of our partners, even unknowingly when we are dealing with fatigue? Exercise, more than anything, brings me back from the deepest fatigue, but how do I exercise my relationships? How do I strengthen the muscles I used to love my children, to be better friends with friends. Fatigue can trick you into thinking that once you’re up again, everything’s the same.
Not too long after I found that clipping, we had company at our apartment. We only have one bedroom but it is in a big old loft, so out came our cots. One day, my wife and the guests were up and I could hear them. I could hear every word, in fact – but there was no way I was going to be able to move. One of the guests announced, somewhat quietly: “Oh look, he’s still asleep.” I wasn’t. I was wide awake. But my jaw was heavy, my arms were not just numb but dead weight, like my legs. I felt drugged though I wasn’t, and I had a strange view of myself from over the cot, a uncommunicative lump. It would take some time – it’s like reaching across a wide gulf, or heaving up a heavy anchor – but I would make it over to the kitchen area for coffee. “Tired?” the guest asked. I said no and didn’t say anything more, which in retrospect hurt me more than it maybe confused him. I missed a chance to exercise my friendliness muscles, but then I need a minute. I would be back, but at that moment I was too tired to explain.