AT FOUR A.M. my stomach growled for the sesame noodles Shanae brought last night, long since devoured. Usually, Shanae ferries over salads or broiled salmon. Sesame noodles are for the nights, every few weeks, when I fall into a pit over my situation and last night, I sincerely hoped, had been a nadir. I was carved as hollow as a Halloween pumpkin.

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I had dragged myself to the door a half hour after Shanae had left the bag. Suddenly struck now by my poor manners, I texted, thanks for the noodles girlfriend you are the best but the second I sent it, I was mortified the ping would wake her husband. Reggie thinks Shanae gives more than she gets from me. So do I. I’m hoping to do better. Be more attentive to Shanae’s ups and downs, more of a two-way friend. But what is a person supposed to do, when they really need help?​

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She shot back a winking smiley face: No prob, Cookie. I gotcha. Thank goodness.

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So sorry, shouldn’t have texted this late, wtf are you doing up?

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Crazy work week, she texted back. Weekend catch-up w/ bagels?

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I texted ¯\_(ツ)_/¯, our private emoji to say, we’ll see how it goes. That’s as much commitment as I can make these days to the future.

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I am unfortunately accustomed to being awake in the night. When I couldn’t fall back to sleep I picked up N. K. Jemisin’s new book, but the words blurred. Even reading was too fatiguing. Not being able to read makes me mad. I wanted, needed, to escape into Jemison’s world. I sat there, propped against the pillows, my legs stretched under the bedclothes, muscles weeping for rest that would not come. 

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My sleep is brittle. Five months ago, I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, a name as ridiculously long-winded as the M.D.’s explanation: “a complex, chronic, multi-system disease about which medical science knows little.” Say what? Plain English: I’m fucked. The odd muscle aches that started I can’t remember how far back, the bone-deep weariness that drops on me like the Acme anvil on Coyote. The so-called brain fog, more like brain motherboard-wipe. My insomnia, dubbed “disturbed sleep architecture,” conjuring stucco Mediterranean archways canted into pastel Victorian turrets, just means I wake too often, I never reach deep sleep, so I miss what sleep is for: rest. I haven’t felt truly rested for three years, which is how long I dragged my ass through too many medical exams and tests and gaslighting, till finally Dr. Newsome gave me the name for it. He didn’t offer much else.

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My online sick-buddies say I’m lucky because diagnosis took me only three years, and my CFS is mild compared to most. I found their Facebook group the day I was diagnosed, sure then that I’d prove Dr. Newsome wrong and figure out a way to get better. Instead, I got a crash course in attitude. Perspective is everything, they told me. Half the people in that group hardly get out of bed. I’m so much better off. Not much consolation on the days when I can barely pick my head up off the pillow. And no, that’s not hyperbole. The fatigue comes on hard and fast. They tell me to mind my energy envelope, that’s what they call it. Don’t push past that limit. Well, if I always minded the limit, I would never fry an egg or walk the four blocks to Trader Joe’s. I’d be unemployed, ergo, on the street. After a few hours of work I usually collapse in a daze. Sometimes I’m revived enough an hour later to make, or order dinner. Some nights I just crawl under the covers for another rest-less night.

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It’s ironic how one worry pushes out another. My private anxiety pre-CFS scares me way less, now, hanging on by a thread with a chronic illness.

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YOUR DEEPEST FEARS aren’t something you discuss with preteen friends. So when my dead grandma began her nighttime visits, I did what a twelve-year-old only child of a single mother does. Submerged myself in music. Played Snake incessantly after school on my new latch-key Nokia. Binged Cheetos, Oreos. Snuck my mother’s eyeliner, to admire myself in the mirror, all grown up.

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The future can’t come fast enough when you’re young. Now, at thirty-five, my future is unseeable. I’m desperate to climb back out from this bloody illness to some kind of normal. I fear how things could as easily go to hell in a Sunday handbag, as Grammy would say. If my freelance web design work dries up and I lose my apartment, if the last of my friends get sick of me being sick and evaporate, if the disease grips me tighter. All of which have happened to my sick-buddies.

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The way I distract myself from fear, in my thirties, isn’t so different. I listen more to Esperanza Spalding now than Aretha. I bury afternoons stalking old crushes on social media. When my nervous system flips into leave-me-alone mode (another delight of CFS) and I can’t tolerate screens or sounds, I do what Reggie does for migraine. Shut the shades, shut the lights, shut the doors, and crawl under a blanket.

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I spend a day like that almost every week. Luckily, Shanae is only a few blocks uptown. If I text shutdown mode she brings food on her way home. If I don’t answer the bell, she knows better than to stick around, and leaves the takeout bag at my door. She understands some moods don’t improve with company. She is that good a friend.

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Shanae is the one person who has seen me up close and personal, through my hyper-energetic youth to this sick-avalanche. When we first met we’d dance for hours on a weeknight, eat the sunrise special at the Empire Diner and grab two hours’ sleep before rushing off to our jobs next morning. Looking back, I must have been running on fumes already, but the high of finding a soulmate and the sheer elation of youth fueled me. Shanae knows now, how on a bad day I can topple over if I stand up too quickly--my blood pressure isn’t too steady. She knows by three in the afternoon if I’m having a good day, or ten in the morning if I’m not. She knows when I hit a wall and have to get horizontal, like, immediately, muscle and brain just done, like my gas tank jack-rabbits to E. Energy envelope decomposing, whether or not I’ve pushed to the edge. I pull up YouTube channels to distract me: Yeti searches, contrail conspiracy theories, the weirder the better. Any diversion beats stewing in gloom.

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What must that be like for her? Her life goes forward in the usual way, while mine lingers on a cliff’s edge. We’re still close, still depend on each other’s insight.

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I don’t keep secrets from Shanae, but I get anxious when I imagine sharing what Grammy taught. I think Shanae would believe me, and I will tell her when I’m more on my feet. I need her to know. But telling takes nerve.

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Every family passes down their ways. I won’t exaggerate my family’s peculiarity. But I haven’t found our way anywhere, even in Halloween stories (where it might could almost fit in).

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When I was little and my mother was working all the time, it was Gram taught me to braid my hair, to grease my elbows and my heels. She was the source of body wisdom. I trusted her.

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She was strict, on the nights her ghost woke me. Practice harder, girl, she’d say. You’re lazy. By puberty, that passage that dismantles the familiar body in its own, involuntary way, I’d become adept at pulling myself apart, and Gram stopped teaching. No graduation announcement. She just stopped showing up.

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It’s exhausting to explain. Even thinking about it has me needing a nap. But I have to sort the best way to explain it to Shanae. The longer I’m sick, the more I want to explain. I need her eyes on this, her level way of thinking it through.

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In her first lesson, Grammy grasped her floral-bloused shoulder, gave it a quick jerk, and wrenched free her arm, sleeve and all. Shut your mouth, Catherine, she said, or the flies will fly in. She’s a ghost, I told myself, it’s not a real body. But I noted with a shudder the familiar patina of orange lipstick perfectly applied, her glasses reflecting puckered moonlight through my bedroom curtains. Do ghosts wear glasses?

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Laying the severed arm on her lap, she reached over with her other arm, startling me out of a dead freeze, placed her hand over mine on my shoulder, and wrenched free my arm too.

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Do I have to say that being dismembered is surreal? I must have gone into shock. I waited for a gush of blood, unspeakable pain. But there was no blood. And there was no pain, just tingling. I clutched my separated, pajama-clad arm. I could still wiggle the separated fingers, and I felt a vibratory me-ness as the fingers complied.

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Leaving me no time to absorb, Grammy deftly smacked her loose arm back in place, rolled the shoulder, and nodded with a Hmph for me to do likewise. My first weak attempt was like slapping air and expecting it to high-five back. Nothing. Terrified it would not reattach, I spanked that arm so hard onto my shoulder I knocked myself back onto my pillow. When I looked down the arm was connected—my flimsy cotton pajama sleeve also intact once more. My stern tutor scowled.

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Some moments feel super-real. My lessons in dismember- and remember-ment made me feel uncomfortably alive, body awake and wide open. I’d be exhausted in the morning, longing for an explanation that could fuse what my body knew to something rational my brain could wrap around.

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Did I have a witchy superpower? Was I a freak of nature? I was positive I wasn’t dreaming these lessons. How was it possible to feel this confusing mash-up of pride, shame, and disbelief. And if I felt all those conflicted things, how on earth could I expect other people to take in calmly what defied everything they thought they knew about the way the world works?

​

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LATELY SOMETHING ABOUT my illness is itching me, the sort of thing I need to run past Shanae. Could Grammy’s tutorial be related to what’s gone wrong in this body? I didn’t think about it before because Grammy’s exercises inhabit some separate part of my world, with their own separate logic. But ever since this thought occurred, I can’t put it down.

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Back as early as Shanae’s wedding five years ago, I had trouble completing a normal day’s work and chores. Stress, I thought. Everybody has midlife stress. I danced at her reception for only a half hour and left before midnight feeling like I’d been hit by a truck. I’d been excited for her wedding DJ, for dancing till dawn. I chalked off my crappy stamina that night to getting older. Which was stupid. I was barely thirty. The illness was creeping in. What’s that tale about a frog that very slowly gets boiled?

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It seemed to me that if the family skill presaged—triggered?—this illness, I’m probably not the only one, so I floated test balloons to my sick-buddies, in group chats and PMs. Do you ever dream of losing parts of your body, or being able to manipulate your body? Crickets. If anyone else has this freaky skill they’re not saying. Most of them had Epstein-Barr virus at some point before they got ME/CFS, but not me. This illness can be so different for different people.

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Gram made it clear I wouldn’t find what she taught in books. I would add, not on Google either. I mean, what search term do I even try? (I have tried them all). The day she showed me how to pull out my uterus, clean, still pulsing to my pulse, she said for the hundredth time: These lessons are passed down by word of mouth alone.

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I’m not supposed to write it down, not supposed to tell anyone outside the lineage. I would know one day, she assured me somberly, who else needed this gift.

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She neglected to mention why I needed it.

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Her visitations stopped when I was fourteen. Out of habit, or to prove to myself it was real, I still practiced every so often when I’d wake at night. I figured out how to detach my scalp, braids and all. Once I managed to pull out just my belly button, which sat in my hand like a tiny, blind mole.

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Grammy’s failure to divulge the point of this skill makes it even harder to explain to anyone. That’s something I could kick myself now, for not pressing her. Mama is gone and I can’t ask my cousins or my auntie. Gram was clear, it skips generations. I am the sole living heir of our line. And no one but those with the talent, know about it. How did she know to teach me and not another grandchild? How will I know, if there’s someone I’m supposed to teach? There’s no one to ask.

​

​

SHANAE STARTED DATING Reggie just a month after she and I broke up. Even though she was mostly straight, I fell hard when we met and so did she. A year later when she said she wanted to be friends, I couldn’t hate her. The sex had gone cold after a few months and we were bickering too much. Turns out we make excellent friends. I consoled myself that it was good not to lose her altogether. Relationships with women can have murky boundaries, ours was normal that way. I didn’t know of course, when we broke up, that I’d soon grow too sick to date anyone new.

​

When Reggie started coming around, at first the three of us would hit a restaurant or a movie together, but he and I kind of rubbed each other wrong. It’s funny how you can like someone and still not get along. But so long as he treats my girl right, he’s good in my book. As other friends peel away, I do sometimes wish Reggie and I might get sorted, though. I could use a couple more folks in my corner.

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The last time I remember practicing the family skill was right before their wedding. I’d kept on trying new parts every so often. A kneecap, my left butt cheek. I got creative. Shanae’s wedding unsettled me more than I expected, a little too much to leave space for that strangeness, so that was the last time I practiced for at least a year. And I had begun to have more urgent problems.

​

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MY FRIDGE WAS BARE again on Saturday, when Shanae showed up with pumpkin spice lattes and Everything bagels. I was hoping to have energy for Trader Joe’s that afternoon, but I’d woken already tired. We sat out on my fire escape. Before I could sip my latte she said, I’m gonna just come out with it. I’m worried about you.

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I set my cup on the sill, thinking, so what else is new. Her tone caught me up short. Shanae’s directness puts people off. Mostly I find it refreshing. What? I asked.

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She broke off a bagel chunk and chewed thoughtfully. Remember how we used to talk about Bigfoot, John Cage, UFOs? About Prince’s back-breaking high heels and whether igloos were the first geodesic domes and whether the Duke ESP studies were real? We laughed at everything. Like, the world is so fucking bizarre, ya gotta laugh.

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I glanced at Shanae’s Nikes, adopted after foreswearing her heels, when we found out about Prince’s warped feet. We’d bonded over the shared impulse to chase obscure stories down the nearest rabbit hole. I had hoped those wild conversations might eventually open a door to my secret, but they never had.

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Something’s different about you, lately. It’s not just that you’ve been sick, or depressed about being sick. You seem... you never laugh.

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Shanae couldn’t read my mind, but she sure got a whiff of what was on it. I swallowed against the lump in my throat. I was asleep when you rang the bell Thursday, I said defensively. You know how out of it I am when I wake up. Also, I owed her at least twenty bucks. My memory sucks these days. I worry that I don’t keep up with what she spends on me. I churned with guilt.

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We gazed at the brick face of the next-door building, the rooftops, my little patch of pale sky. The city smelled of burning garbage, or a fireplace that needed cleaning, that first crisp day of autumn. We both knew she wasn’t talking about my fatigue, my shut-in-ness, but something deeper. The thing about this illness, sometimes it makes me feel like there is nothing deeper anymore. Shanae pressed on. 

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I’ve been thinking for a while, there’s something you’re not telling me. About the CFS? Or worse? Shanae smeared cream cheese on a half bagel and held it out to me with a little smile. I know you pretty well.

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My stomach growled, confirming her statement loudly enough that we both had to chuckle. I bit into the bagel but I didn’t really taste it.

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So?

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I had waited a long time for this. But where to start… I dabbed cream cheese from the corner of my mouth. I’ve been wondering what set off this illness.

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The possibility of revealing myself even to Shanae, as fully weird as I really am, jangled my stomach. I laid my bagel on my napkinned lap and zipped my hoodie tighter.  

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So, she said slowly. Something before you got sick.

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I nodded. Such an implausible cause made it so much more upsetting than a post-viral syndrome, or just plain bad luck. I felt disloyal even thinking it, but had my ramrod straight, never unsure gram somehow caused my illness? I didn’t recall my gram being sick a day in her life, but she had died so young.

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The first few times I followed her directive and pulled myself into pieces, I had the creeping thought that even if I could be put back together, I wouldn’t be okay. Something would stay wrong, inside. But I always seemed the same after, and so I worried instead about what the fuck it all meant. What else in the world, besides this body of mine, was more malleable, less solid. Less what it seemed.

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When I was younger, I blurted out, before I could lose my nerve, I had these… visitations. I’m not sure what to do with the possibility they might be connected, A, because the M.D. would only take it as evidence of me losing my shit, and B, because, well, does it contribute anything at all to the problem of how to get better? I took a breath, and a long pull of my latte, nostalgic for the magical caffeine high that eluded me since I got sick. These days coffee gives me the shakes, but I wasn’t gonna let that stop me sipping the fancy coffees Shanae brought. I pushed away the sudden knowledge that I was overdue to get horizontal. I have to get through this. Just let me do this thing, I scolded my failing body. I was mad at my back for slumping, my legs for vibrating with the opening chords of nerve pain. None of the drugs the M.D. has offered touch this pain when it comes.

​

Shanae shifted uncomfortably. I don’t know what’s useful. I just think we always prefer to know the truth.

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But do we? Was it possible the truth could make things unbearably worse? I did what I always do, when Shanae poses an uneasy question. I got philosophical.

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It’s not like the truth is always a settled thing, Shanny. I hadn’t called her that in years. A smile tugged at one side of her mouth. Consensual reality. If we stop agreeing on what’s real, it’s all up for grabs.

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Kinda like our politics, she agreed with a grimace, accepting my evasion as perfectly normal. We drive Reggie crazy with our elliptical exchanges but we’re oddly compatible this way. Shanae and I both regard closure as a myth, so there’s no pressure to proceed neatly from question to answer. Shanae says nobody she’s ever known can relate like I can to the way she thinks. I tell her we need matching Club Weirdo hoodies. Even with my raggedy energy these days and our visits reduced to her, coming into my dingy apartment for an hour or two when I can deal, I still have the satisfaction of watching her shoulders relax as we start talking. These days it’s rare to feel I actually have something to give—and just by being me.

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The phrase “nothing to lose” gelled in my mind. If not Shanae, who in the world might I ever confide in? Sometimes, lying in my bed on the bad days, it seems clear the most lethal part of this disease is the loneliness. Hadn’t one of my sick-buddies said suicide was the most common cause of death for people with ME/CFS? Not that I was about to do myself in. But there had been times lately when I let myself wonder, if my body didn’t collapse altogether, would I survive the loneliness?

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I don’t think you want to hear this. My face contorted with tears but I refused to cry. I fidgeted with my napkin, folding a corner up, smoothing it back down, careful not to jostle my abandoned bagel. It was the only real food in my apartment.

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Shanae tipped her head in that way she does when she’s too nice to tell me what a moron I am, and smiled her little half-smile. I told you the worst thing I ever did, she said softly. For the record, Shanae’s worst thing, persistently teasing her sister about her braces when they were still in elementary, would barely make a list of small slip-ups for the average human, but she still feels guilty. Yes, she can be abrupt, blunt even, but Shanae is the definition of kind, and loyal. I owed her the truth.

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My stomach buzzed as if I’d detached it. My ears thrummed, loudly enough that I wondered if this was how Reggie’s migraines begin. Some of my sick-buddies get migraines too. I can get pretty ADD when I’m fatigued. I forced myself to take a breath. Focus. I knew I’d pay for it, but sometimes you just do what you gotta do anyway.

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Bending forward, a lightheadedness I had ignored, lessened. Good. With my head lower I could concentrate better. I pushed up one elastic hem of my sweats, laid my palms on either side of the exposed and vulnerable shin, noting unhappily the dusky skin over my anklebones. I had to remember to pick up some damn moisturizer.

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I shut my eyes, inhaled deeply, and quickly, cricked the joint just so.