85. Notes to Self

☸ Write to-do lists in your bullet journal, out of necessity, because the cognitive dysfunction of FMS and ME must be managed with lists, and one master notebook is better than discovering, years too late in an empty desk, a mélange of neglected flesh: checklists unchecked, recommended book titles unread, good physicians across various specialties, bad physicians across various specialties, field notes from clinical visits with both kinds of physicians, random stories and Tamil words from Amma's reminiscing about Batticaloa, random quotes and writerly lines you plan to use someday but probably never will. Remember, if you don't write your lists, you won't remember anything.

☸ Make your coffee in your eight-cup Chemex the night before. Forget to do this and curse yourself when you wake up late and find it empty. Spook the cat by grinding coffee beans. Do some dishes if your hands aren't a tangle of jellyfish stingers and if you can manage to stand for that long. Feed the cat. Try to locate the source of that one weird smell that never goes away. Wonder if it's an olfactory hallucination, if the neurologist who diagnosed you with a brain tumor was right all along. Clean out the fridge and take the trash down. Don't forget your keys. Don't forget your memory is going. You were once able to glance at an airport sign in Rome for hostel arrangements and remember the telephone number hours later. A mind like a steel trap, which is how so many teachers have described you. Remember how you took it literally and thought intellect could kill. You're an academic, and intellect escapes you now. Could be the residual effects of the Lunesta you took for years, or the drowsiness brought on by nortryptiline, or the simultaneous magical girl perk and battle fatigue of Lyrica. Or just the usual thicket of brain fog or fibro fog. Think of how ridiculously reductive it is to have to explain your lack of energy in terms of spoons, as FMS and ME patients tend to do, saying, "So I start the day with a finite number of spoons, and I pay for everything I do with a spoon, and some days, some things require more spoons. When I run out of spoons, that's it. I'm done." Dwell, resentfully, on how you're always in a deficit of spoons. Freewheel to that blog you kept in college, titled after a line from "The Love Song of J. Alfred Prufrock," I have measured out my life in coffee spoons, and how prescient you were to call it that. Wonder why the line is nagging you. Struggle to backtrack in your thinking, wandering the apartment for clues. Dishes, pills, Prufrock, spoons, coffee. Coffee. Brew your coffee. Remember that it is impossible to wake up without knowing your Chemex is full and waiting for you, that between meds and a lack of spoons you are prematurely drained of the desire to face the day. Ask yourself, How am I supposed to live? Stir the coffee grinds with a spoon, not your finger. Boiling water stays painful even when you can't tell. So does sizzling bacon. So does self-surgery on a plantar wart on your toe. So does clothing and bedding and gravity. You had a question buried here, somewhere, but you've forgotten, haven't you? Conserve your spoons or ration your balut; don't bother trying to remember. You didn't have an answer anyway.

☸ Do your stretches. Ignore the pain. If you don't exercise, it will hurt more. Think of The Little Mermaid, not the declawed Disney version, but the one you read as a child: how she traded her tail for legs and every step felt as though she was walking on knives. Think of how the point is that she stoically endures agony without reward. Think of the photos you've seen of men like Appa, decapitated by a tsunami or a machete, one eyelid up and the other shuttered and what were you supposed to be doing again?

☸ Eat right. Remember that since the appendectomy, you do best when you eat as though you have a bowel stricture, meaning no corn, beans, gristly meat, fruits and vegetables with skins, whole grains and seeds; no persimmons, ever. Cheat when you're stressed, which is all the damn time. Help yourself cheat by making grocery lists and losing them. Make a master list in your bullet journal and forget to consult it. Base your weekly meal plans on the amount of cooking and cleanup required. Use your POTS diagnosis to justify all those potato chips. Pour money into FreshDirect's delivery service because carrying your own groceries consumes weeks' worth of balut in one go. Buy vegetables you put in the crisper and promptly forget about them. Let that line remind you that you put avocados and brussels sprouts in there a week ago. Remind yourself to remember to take the chicken down from the freezer and accept that you won't. Don't ignore your hunger or try to fill it by eating crap or you'll be doubled up in pain all night. Accept that you'll be doubled up in pain all night. Exhaust yourself by mentally rehearsing this dietary regimen until you're too tired to actually eat, and recognize that you weren't going to eat anyway — that energy has already been promised to writing.

☸ Take your fucking supplements: ABX Support, Epicor, VitaPrime, Omega-3s, vitamin D, CoQ-10, lysine, magnesium, B-complex, zinc, turmeric capsules, ginger capsules, those black Chinese pills for stagnation made from flying squirrel droppings, nattokinase. Most of these pills are gigantic and you choke on them regularly, but what else are you going to do, get them the normal way by eating right?

☸ Check your email. Remember that POTS will fuck with you if you stand too quickly. Never mind that you've padded the area near your chair with towels, your knees won't survive the impact of a hardwood floor. Be preventative for once. Stretch in your chair. Note that you've crossed your legs twice into a pretzel; remember that this will encourage your knee caps to float inward and then you can forget about putting any weight on them. Uncross them. Flex your hips. Wiggle your ass around. Remember that you left your cane in the other room. Remember the story Amma and Appa told you once, back when Appa was a postdoc and Amma edited his multiple-choice exams and accidentally mistyped one of the answers, "as friction," as "ass friction," and on exam day, a student in the front row said, "Hey, Dr. Mani," and started rubbing his ass in his chair, and Appa stared mystified until he looked at the exam himself and then joined in the laughter. Remember the story about heads on pikes at Appa's university. Remind yourself that the shortest path from head to heart is language. Remind yourself that languaging is the fundamental partner of medical analysis.

☸ Roll out the muscle knots in your quads and glutes on your foam roller. Yes, it's painful. No, you don't want to rest your full weight on a single muscle on high-density foam and feel it slowly, excruciatingly, pop, grind away from bone, and flatten. Do it anyway. Lie there close to blackout for 10 minutes, hips slung over the pipe like some face-down ass-up offering to pagan gods. Comparing pain is a useless exercise, but consider your people, who have suffered through war, war-related injury, disability, PTSD, homelessness, constant contingency, and know that what you're going through is nothing. Think about the folklore you heard when you studied in Japan, the keukegen (毛羽毛現) in particular, a hairy shuffling spirit that lives in your house and makes you sick. If you could just rout it out of your apartment. If you stop with the wishing and just do your bodywork every day, it won't hurt so fucking badly.

☸ Masturbate. Often. Until your clit goes numb. Pray that you'll win this game you've dubbed orgasm roulette, as in Russian roulette, as in orgasm will either placate your lower body so that walking feels less like being broken on the rack or it will admit medieval torturers into every imaginable tissue and crevice. Since the uterine-colon adhesion, you never know which. Like chasing the dragon, the promise of relief makes the gambit worthwhile.

☸ Shower. Really, it's not that hard. On the patient intake forms, you always check able to do with little difficulty for bathing, dressing, turning on taps. Amma was right, you're such a fucking liar, but she's the one who trained you in childhood to look and sound your best at the doctor's office. Tell yourself that a hot shower relaxes your stiff muscles more than masturbation, that if you just do it, you'll be able to dress yourself painlessly for real. Think of all those aromatherapy soaps going to waste if you don't. Think of how good a hot shower feels on your muscles, and how dizzy the heat makes you. Remind yourself of what your shrinks have said: that not showering is the sign of a disturbed mind. You know your mind is disturbed, and what of it, but do you really want to prove them right? Recognize that even spite isn't a reliable motivator. Give up, wash your face for vanity's sake, and go back to bed.

☸ Leave the apartment at least once a day. Agoraphobia is easy to surrender to; every voice outside the apartment door becomes another recruit in an anti-Tamil pogrom. When you leave, accept that humans exist in the world. Schedule coffees with friends. Cancel on them. Pretend you're busy to hide your ineptitude and fear. Pretend you're well-adjusted. You might actually start to believe it.

☸ If you leave, do not leave without:

1. Keys. Don't leave them in the door, and lock the door behind you.
2. Wallet. Make sure it contains your MetroCard, credit card, state ID, university ID, a minimum of $60.
3. Water. Fill a leakproof travel mug and, like Appa, leave it behind.
4. Umbrella. Never trust the weathercaster, but know that this one addition to your bag will make you crumble.
5. Folding cane. You might not need it right away, but as the day wears on, your balut and joints will go.
6. iPod, headphones, extra headphones. Plug in and disappear on the subway when you can't get a seat, which is always true at rush hour, even with a cane. With the invisibility of fibromyalgia, it's not like people often see how much pain you're in, even after the appendectomy when you clutched your arms to your stomach and doubled over at every bump.
7. Destination and directions. Don't tell yourself it's just one errand, just up the block, you won't forget. You have, and you will.
8. Cell phone. When you realize you've left your destination and directions at home, you need to be able to look up where you're going or text someone who can tell you.
9. Medication: Three doses of Lyrica in case you're stranded somewhere for a night, because that one time your insurance wouldn't cover a refill, you had to stop cold turkey for a few days, went manic and aphasic and sick to your soul. One dose of LDN. A Flexeril, a muscle relaxant that makes you limp and heavy, though you've slouched and slurred your way through teaching on it. A Celebrex, a painkiller that seems to exacerbate your fatigue. And Advil, Aleve, Tylenol, or aspirin, enteric-coated or it'll chew your stomach lining and you can't afford another abdominal surgery, financially or physically. If NSAIDs fail, Tramadol, which promises normalcy for a day and resignation when the magic wears off. Don't remind yourself that your nightstand looks like a pharmacy. Don't think about how dependent you are on health insurance or how many decisions you've made about your medications based on whether or not you could afford them.

☸ Tell yourself that all the prognostications of death-by-accident that flash before your eyes are not real. Like when you drain pasta and see yourself spilling boiling water all over yourself. Or when you open packages with a box cutter and see the blade slicing through your wrist. Or when the train approaches and your body takes the fatal lunge. Or every time you take the stairs and see yourself sprawled at the foot, legs akimbo, head at an impossible angle. Don't kid yourself, your death is more likely to be intentional. You've held a knife to your own throat before and met your eyes in the mirror, with the lights on, in case of accidental blood; you've stopped on railroad crossings to watch the train turn the bend. You haven't died yet. But you can. You can.

☸ Recognize that you aren't the problem; your disabled life is worth living. It's that the eugenicist world you live in won't enable you to live well.

☸ Cultivate an aura that can be intentionally misread. Tell yourself this is what it means to be misabled: to cycle through imperfections until one accidentally slides into a state of being that naturally, simultaneously, evades and invites (mis)interpretations from outsiders. Something so fluid, so essentially polumetis, that the self always appears through the phenomenon of multistable perception. You can't perceive the rabbit and the duck at the same time, even when you know they are both there. You perceive what you are predisposed to perceive. Correctly identifying and managing that predisposition in others, making others work for The Answer then making That Answer work for you, is a reflexive tactic, habituated praxis, unthinking and instinctive, energy conserving, more than a conscious art.

☸ Understand that notes like these are infra-ordinary enactments of misability, ranging from memory prompts to explicit directives that organize my behaviors, day-to-day, week-to-week. Written memory aids are critical interventions in the performance of a normal routine, allowing me to masquerade as neurotypical; however, they simultaneously furnish evidence that divulges the truth about my cognitive faculties. Encompassing disabled and nondisabled characteristics, these notes raise a misabled slippery disguise, operating like an open secret — what overworked academic doesn't keep to-do lists? — publicly proclaiming this anomaly to pass it off as normal. Misability as a term includes disabled and nondisabled characteristics, their intermittency, the behavioral transformations they demand, the cunning ability to expediently flit in and out of sense-ability and advantageously harness disabled and nondisabled meanings. Seri seri. It's the same with chronic pain. Non-apparent to most, but detectable to those with similar frameworks.

☸ Tell yourself that in their infra-ordinariness, even specific notes like these are common. Innocent, even. In the act of jotting down a deadline, a book recommendation, a quick to-do list, who imagines they will someday end up writing down the minutiae of their life, not as disposable reminders, but as indispensable rules? And yet, however we get there, we all do.

☸ Tell yourself you are sick for a reason. Vicarious trauma. Adrenal overdrive. Cortisol depletion from unwavering wariness. Be as academics and clinicians have made you: one-half apologetic, one-half paranoid. Invent your grand narrative. Pray it doesn't break you.

Note: The symbol used for these bullet points is the dharmachakra, the wheel of Dharma, iconography that appears often in Hindu temples to Surya, the sun god, the father of Karna.