Only a few months after I’m diagnosed with what is ominously called the “living death disease,” I become bedbound.
What happens is this: at the time I receive the very unwelcome present of my diagnosis, I fall into the “mild” category of ME/CFS. This means that I can no longer exercise or expend significant mental energy without experiencing agonizing pain and crushing fatigue, along with a number of other symptoms that are too dreary to list. But I can still walk short distances, listen to music, watch TV, and read books. Basically, it’s the lifestyle of an aging hermit.
This situation is, obviously, unacceptable. I’m twenty-five years old, at the peak of my beauty and physical fitness, and I’ve just gotten accepted into a very demanding grad school. It is absolutely crucial that I get back to my previous state of health as quickly as possible.
My GP diagnosed me, but she doesn’t know how to help me. So after a few months of searching and adding myself to the purgatories of specialists’ waiting lists, I find one who has an opening. He prescribes me a medication, a probiotic called GCMAF; the fancy all-caps abbreviation lends it legitimacy, gives it the heft of something like NASA or the CIA. Each day I take it, I feel sicker and more tired. But the doctor is a renowned expert, so I trust him. He tells me there is no possible way this medication could hurt me. He tells me my fatigue is due to nothing more than a long walk I took several days prior, and that I’ll soon feel better.
On day six of taking the medication, I am unable to get out of bed.
In all my months of living in the mild category of ME/CFS, I had heard about people in the severe category—the bedbound category—but I never seriously thought that it would happen to me. But now, within only a few days, I’ve become unable to walk more than a dozen feet or tolerate more than a few minutes of screen time or speech without sliding into “post-exertional malaise,” or a “crash”—a state of fatigue so profound that I can barely move and can speak only in a whisper. I keep waiting for it to pass and to return to my previous baseline, where I could at least pretend to be somewhat normal most of the time. I keep thinking, You must be kidding me, right? I mean, how can anyone survive like this? It is unimaginable to me that this is my new normal.
But it is. I move back in with my parents (meaning, they come to get me and wheel me downstairs in a luggage cart and transfer me like a piece of furniture to their home). From this point onwards, I can use my phone for only a few minutes a day. I struggle to walk to the bathroom or to have a conversation. My world shrinks to the size of a room, the size of a bed, the size of a coffin. I have the feeling that I have been buried alive.
Around this time, it hits me how inaccurate the general idea of the “worst case scenario” of ME/CFS is. If you Google Image Search this illness, you’ll find nothing worse than a brightly colored cartoon picture of someone lying on the couch or in bed with a pained expression, perhaps watching TV. There will also, invariably, be a stock photo of woman holding her head. But these are all woefully inadequate. Even moderate and severe versions of the disease leave sufferers unable to watch much TV. And at its worst, when shit really hits the fan and you go from severe to very severe, you find yourself in diapers with a feeding tube, unable to tolerate any sensory stimulation whatsoever. Earplugs in, eye mask on, and no movement allowed. You end up essentially blind, mute and paralyzed.
I am severe now, and I know there is only one rung left below me on the ladder.
Memories circle like vultures. Over the years before I got sick, I wrote eight novels. Or was it ten? I wrote them so fast I kind of lost track. And they weren’t all great, either. In fact, some of them were abhorrent. But I do remember how much I enjoyed writing them. I would write urgently, maniacally, often getting up in the middle of the night to type in the cold Arctic glow of my laptop. I’d listen to song after song at the same time, drinking in the music and spitting it back out into words, my thoughts moving so fast that my hands would stutter and jerk and tremble in their failure to keep up.
I try, over and over again, to do just a little bit of the things I used to love. I try to write a few paragraphs, but it catapults me into a crash. So then I try to do a little reading. But even this makes me crash. My brain can’t handle the exertion of reading the words, of processing the story. My vision turns blurry and the words swim on the page. I blink and blink, trying to fix it, but I can’t fix the exhaustion of my eye muscles.
Insomnia circles me, too. Whenever I try to sleep, it feels like I’m trying to submerge myself in a pool of water an inch deep. The greater mass of my body sticks out of the water: a pained, heaving island. I lie awake at night mourning my life, wondering how I will continue to live in this shattered reality. This nightmare that won’t end.
In my psychiatrist’s letter to my parents, he suggests treatment to optimize neurodegenerative symptoms of depression and anxiety such as poor energy/fatigue, hypersomnia, and lack of motivation. He recommends working with a clinician from the Center for Motivation and Change.
Sometimes, on a good week—or later, as my limits shrink, a good month—I am able to bathe. Hot or even warm water makes me crash, so I must bathe in water that is tepid, the temperature of a puddle of dirty rainwater. In the tub, I see a pair of hairy legs stretched out before me and get excited—a man is in here with me!
Then I realize that they are only my legs. Trying not to look at them (or any part of my body), I quickly soap myself and splash water on my torso. I am already beginning to shiver, which means more energy is being expended. I am thinking like this more and more now—Using up too much energy. Gonna crash. And more often than not, I am right.
During my first year of being bedbound, I enter a decline that seems like it will never end. I’m in free fall, my baseline sinking lower and lower each month, and I can only watch as it continues, this slow process of my life being chipped away. I’ve been trying to deal with it in a plucky, stiff-upper-lipped manner. I’ve been telling myself:
Ok, I can’t lift weights anymore, but I can go for walks.
Ok, I can’t go for walks anymore, but I can read a book.
Ok, I can’t read a book anymore, but I can listen to music.
Ok, I can’t listen to music anymore, but I can use the Internet.
Ok, I can’t use the Internet anymore, but I can text a little.
Ok, I can’t text a little anymore, but I can lie in bed with my eyes closed.
So this is what I do.
Most people have a tolerance threshold when it comes to empathy. Up to a certain point, we are sympathetic to the person who has been traumatized or had a spell of bad luck. But after a while, we reach a tipping point. When someone has suffered tremendously over and over again, it starts seeming like too much bad luck to simply be bad luck. So we start asking ourselves, what is the common denominator here. What did she do to deserve it. If maybe, come to think of it, she was the one who was making these bad things happen all along.
Something to think about as I lie in bed, wasting: the human body is a miracle of evolution. I can still feel my muscles stretching and flexing, sweat beading from three million pores, learning how to punch a 150-pound boxing stand so hard that it would fall over from a single hit. My strongest muscles—duh, my glutes. The ones I spent four years working on in the gym. To the point where I went from disappearing when I turned sideways to being able to lift three hundred pounds lying on my back. I could flex my glutes and make a shelf. I could probably have stored things on it—a small dog, perhaps.
Ironic that for almost all of those four years, I was dating someone who continually let me know that I wasn’t good enough, wasn’t working hard enough, that even though my legs were shaking after my workouts I wasn’t lifting heavy enough because my ass wasn’t the consistency of a rock. I’d flex and he’d still say Saggy, soft.
You need to eat more hard foods, he would tell me wisely. That’ll translate to your body being harder. You eat too much Halo Top. It’s not good. Your body needs something to chew on. He’d show me pictures of Instagram models with huge asses and flawless expanses of bronzed skin and no hip dips. I’d tell him Actually, she’s gotten butt implants, look, pointing out the contours of Sierra Skye’s implants, and he would give me a pitying look and tell me not to be jealous, it’s unattractive.
Now I really am saggy and soft. My ass practically reaches the backs of my knees. My skin has gotten wrinkly, too, because of muscle wastage or collagen breakdown or a combination of the two. It’s like this all over my body, bunching up like folds of loose silk when I touch my forearm.
I start thinking about evolution gone wrong. I imagine myself sliding backwards along the scale, a life form barely even alive, sinking down to some unimaginable abyssal depths. I am a fish, an invertebrate, a prokaryote. A single cell crushed at the bottom of the sea.
My PhD-holding father, to my mother: “The way I see it? Lightning doesn’t strike twice. To have had a life-threatening eating disorder, and self-harmed, and to have had all these bad relationships with men, and now to have this chronic fatigue syndrome thing…well. You gotta think about it logically.” A rueful chuckle. “Nobody could possibly be thatunlucky.”
In the tenth month of being bedbound, I use my phone while I am already in a mild crash. I have that dreadfully familiar sinking feeling, the sensation that my limbs are moving through thick mud. My head aches; my brain feels like it is melting. My tinnitus has ramped up from a soft whine to a shrill buzzing in my ears.
These are all warning signs to slow the fuck down, and I know them well by now, but on top of them is something much more powerful: I’m sick of this. I’m sick of having to put my phone down after using the Internet for only ten minutes a day, to continually limit myself and say No, no, not today, I need to rest. Right now I don’t care if it makes my crash worse. I just want to do things, to live a little, to pretend I’m normal for a few minutes.
So in the space of thirty minutes, I do these things: I write an email to a renowned ME/CFS doctor, desperately asking for help. I text two of my friends. And I listen to a song. Just one.
The next day I am paralyzed. I have never been paralyzed before. It’s mid-afternoon when it happens, and I lie unable to move anything below my neck for hours, watching the light fading from the room, the darkness collecting in the corners, behind my dusty bookshelf, my unused dresser. By the time my mother comes in with dinner it is entirely dark.
When she asks me to sit up, I whisper: “I can’t. I can’t move.”
“What do you mean, you can’t? Don’t be ridiculous. Of course you can.”
I keep whispering that I can’t. She tries to make me sit up, pushing and prodding at my arms, and she must feel how my body is limp, bones sliding around in a baggy sack. She starts to panic, and her panic makes me panic. She hurries downstairs and I hear her discussing with my father whether they should call an ambulance. I start to cry. Snot runs into my mouth because I can’t wipe it away.
I plead with them not to hospitalize me. I know that if I am sent to a hospital, I will be made even worse by the relentless stimulation, the light, the noise, the constant presence of nurses and patients. Trying to remain calm, I lie in the dark and focus on breathing.
Within an hour I am able to move again. Just my fingers, at first.
I remain in the crash for a week and a half. I have to lie as still as possible during this time: I can’t even scratch an itch without plunging myself deeper into post-exertional malaise. I can’t brush my teeth for a week. I can’t walk at all. My mother has to wheel me to the bathroom in a rolling chair. I barely have the strength to wipe my ass. I can’t flush the toilet. It’s almost two weeks before I can use my phone again.
I have almost no memories of this time, besides a feeling of utter horror, a reddish blackness creeping in around the edges of the room and clouding my vision. And the sensation of my body turned into something horrific, something that perfectly echoes my sensation of paralysis: a torso without arms or legs. Almost no facial features, just a slitted mouth like a wound, sewn shut. And eyes burning holes in the darkness.
I find this out later, by looking at the notes on my medical file, the one my parents don’t realize I can see: the day after my paralysis, my father contacts a social worker. He asks her for psych recommendations for me, and in return, she sends a long list of psychiatrists and rehabilitation specialists. He tells her, “Amy refuses to leave her room.”
For the first few months I’m bedbound, the remembering hits me every time I wake up, the remembering and the grief: My old life is gone. I’m disabled now. The way it hits you when someone you love has died.
But eventually, this doesn’t happen, and I can no longer remember what it’s like to be healthy. The illness has seeped into the core of me.
The thing about learning to live with ME/CFS is that it’s completely antithetical to the narrative we hear about “fighting.” With other diseases, pushing through and making yourself do more is cause for admiration, and the harder you work, the more worthy of praise you are. This is how the world sees illness sufferers, generally:
The man battling cancer who finishes a race? Hero! Amazing!
The woman with MS who manages to complete her degree? Inspiring! #warrior!
The woman suffering from ME/CFS who drops out of grad school so as not to overexert, lies in bed all day and forces herself not to use any screens for a week? Kind of a loser, honestly.
With this disease, you have to make yourself do less than you want to, less than you think you can. Way less. It’s not like getting up again each time you’ve been knocked down, struggling back to your feet with an expression of grim determination—Just try to keep me down, ME/CFS! No. Doing that is the quickest way to become bedbound or worse. The only way to fight this illness is by forcing yourself to lie down again and again, quietly, making yourself into something half-alive: a cocoon that might last years, or decades, or forever. And all the while surrounded by people who don’t believe you, who push you to do things that make you sicker.
After I recover from my worst-ever crash, I am determined more than ever to enforce rest on myself. Even when I feel like I can use my phone again, I decide not to look at it—or my computer, or books—for an entire week. I force myself to do nothing but eat, sleep, use the bathroom, and meditate. It’s the hardest thing I’ve ever done, but during this time I can feel my baseline expanding. I can feel the pressure in my skull going away, can feel my tinnitus quieting down, can feel myself getting better. By the end of the week, when I carefully test my limits, I am able to do more than I’ve been able to in months.
But what is better? It’s all relative. Better is being able to brush my teeth every single day. Better is being able to walk to the bathroom without assistance. Better is being able to read a book again, slowly—one page at first, and then for a minute, and then for five minutes a day. And, later, for half an hour. Eventually I can use the computer for one to two hours a day…and then, gradually, I plateau.
But I can’t help asking myself: is it good enough to live for? And when will this end? Will it ever?
I can no longer leave my house, but in one of my dreams I make it to the ocean. It’s snowing, and I don’t recognize the beach, but the rough sea and cold packed sand look just like the Atlantic of my childhood. The snow glitters down from a gray silk sky and melts softly into the crashing waves, vanishing in their swell and recede.
I know I am sick in the dream. I know this in every single dream I have now. I imagine each snowflake as another day that I have lost to my illness, but then I realize that’s stupid and doesn’t make sense, because I also know that the snowfall stretches over the entire sea, and there are more flakes than there would be days in my life even if I live to be a hundred. So maybe the flakes are all the people who are sick like me. Or maybe it’s just snow, signifying nothing other than the fact that I can’t be outside in snow, just as I can’t visit the sea. I stand there for a while, watching it. As always, there’s the temptation to plunge into the water, but something, some fear or hope, keeps me on the beach.
When I wake up it’s winter in real life too. I lie in the stifling cave of my bed, breathing in the stink of my illness. I’m able to sit up on my own these days, and walk and talk, but it’s been a while since I’ve had enough strength to bathe. Maybe next week. I pull back my blackout curtains and see that there’s a fresh fall of snow outside, a sparkling crust forming on the top layer. It’s so bright I can’t look at it except through slitted fingers and with my eyes almost shut, and even then I have to look away after only a second or two.
I fantasize about going outside. I can’t do this, of course. I have to rest. I always, always have to rest. But if I were able to, I’d do this:
I’d go down the stairs, slowly and carefully, sitting down on the top step and lowering my feet and then my body to the next step. It would take a while, but I think I could do it, as long as I knew I wouldn’t have to get back upstairs again. I would crawl to the front door, too, dragging my body over the soft carpeting, ignoring the pain slicing through my body. And with my last bit of strength I would pull the door open and crawl out into that cold fractured light, that glittering prism, that violent and beautiful morning.
Amy Smith is a writer from New York. You can find her on twitter at @lapis_lazuli11.