It is unfortunate that fatigue and tiredness are listed as synonyms in dictionaries, because fatigue, as a medical condition experienced by people with post-viral illnesses, is a different beast than the daily tiredness brought on by work and play. I’ve tried often to capture the distinction. I want to try again.
You wake at eleven a.m. on the day your daughter and husband are sightseeing in London without you, because you knew you’d be in no shape to join them. But . . . eleven o’clock? Last night you set your alarm for ten o’clock, so either it didn’t go off, or more likely, you turned it off and don’t remember. Your dreams are still with you: people crowding onto a bus to run away from something; gunshots; forced to choose what and who to leave behind.
In the here and now of this very late, rainy morning in London, however, you just need to run to the bathroom to pee. And you’re aware, if you’re going to join your husband and daughter for a show at the Old Vic tonight, you need to do so and get going tout de suite. To be on time for that show, you will need to catch a bus at six o’clock, and if you’re going to catch a bus at six o’clock, you must, in the next seven hours, get up out of bed, pee, bathe, put in your contacts, apply some makeup, decide what to wear, put it on, cook something to eat in the vrbo kitchen or venture out for food, download the transportation app, and figure out the bus or tube route to get you to the theater.
And this is the part that you think healthy people do not experience: You want to pee. You want to bathe and dress. You want to go to the show. These activities are important and valuable to you. What you are feeling as you lie in bed is not depression, in which nothing seems important and nothing has value. On the contrary, you can picture yourself in the bathroom, you can picture yourself dressing in the bedroom, you can see yourself riding the bus to the Old Vic, greeting your daughter and husband and laughing at the sheer joy of being together at a famous theater about to sit and watch a lauded performance.
Yet you continue to lie in bed. An assessment is happening. In the same way that someone with cracked ribs would reckon how much it’s going to hurt to roll over, stand up, and walk to the bathroom, you’re assessing how many invisible units of energy you’ve got in you to do those simple movements. Do you have enough?
Momentarily, you lie to yourself. Of course you’ve got enough! This is easy! The path ahead is clear and doable! You’re just about to swing your legs over the bedside when reality spreads through your body like a swift, unwelcome invasion of some kind of parasite that devours energy and chews through your hopes. Your legs remain still under the covers. In a moment of truth, a moment you don’t intend to last, you close your eyes.
When you open them, it is one o’clock. Two hours have passed. You now have five hours to get on board a bus to the Old Vic.
The blinds in the bedroom of the vrbo are still closed, but you can tell by the sound that it’s stopped raining. You think of your daughter and husband. You know their plans were to sightsee in the city center. You wonder what landmarks they’ve seen today, what they’re seeing now, what you have missed and are missing. You wonder if they’ve managed to stay dry.
Thinking about their sightseeing leads back again to the question of the show at the Old Vic. Can you pee and bathe and dress and eat and plan a route and catch a bus in time? A simple question for a healthy person, but for you it’s another, and now more urgent, calculus. So many pieces. So many variables. The strength in your legs, the level of your energy, the extent of your brain fog (can you in fact figure out the bus and tube route?), the time it might take to dress, the effort it might take to get something to eat, how close is the nearest restaurant or take-out, how far will you have to walk to a bus. And the really remarkable thing is that while you’re lying with your head on a pillow making these calculations, an entire hour goes by. Just like that. It’s now after two o’clock. Your window for actually stepping onto a bus has shrunk again. And you still haven’t gotten up to pee.
You have an image of the Old Vic in your mind, though you’ve never been there. You see yourself sitting in a velvet seat between your daughter and your husband, poring over the program and taking in the set, full of promise, on the stage. You have a sense of the excitement you’d feel as the curtain rises, a sense of the nostalgia you’d feel for the evenings forty years ago when you were a student in England seeing plays with performers whose names now draw top billing. You know what the evening could be, and all that it could bring.
But in spite of all the pictures in your mind and the desires of your heart, as though your body has decided of its own accord, out of its own knowingness and practicality, your fingers, as though they are independent of your brain, text a message to your husband: Can you return my ticket for tonight?
And that’s it. You’re not going. With more than four hours to go, you’re not going. You didn’t decide. Your brain, your heart, your love, your desire; they had nothing to do with it. Your body decided. Your wasted, heavy, burdened legs and arms and cells and blood vessels and mitochondria—and whatever else is involved in chronic fatigue syndrome—made this wretched decision. Your heart sinks and you feel an irredeemable longing. Your mind is rehearsing apologies to your daughter and husband. But your body—you can’t deny it—is stunningly relieved. Every muscle, for hours now having been tensed in preparation for a Great Journey, lets go and sinks into the mattress.
And it is that letting go you can’t forgive.
I spent that evening alone. I eventually did get out of bed, stayed in my pajamas, and cooked some eggs for my dinner. Since I had slept so late, I was awake when my daughter and husband burst in the door at eleven p.m., brimming with news of their sightseeing and reviews of the play, which they both deemed marvelous. After my daughter left and my husband went to bed, I lay awake on a couch in the living room reading the script they had bought me. The play was The Brightening Air, by Conor McPherson. Someday, I hope to see a production of it. When I’m not so tired.