I Don’t Want To Go To Sleep

I remember being small and racing gleefully through the summer’s golden endless light spilling across our lawn, fizzy with exhaustion. [All right, to be honest on the coast where I lived it was rare to have a day, even in summer, that ended in a sunset instead of a wall of fog, but they still happened.] On those thrilling rare days, I would beg my parents not to send me to bed. I didn’t want to lose a second of the gorgeous, precious light, riding punch-drunk joy until I collapsed. I would smuggle books into bed to read in the last bit of light, and when it got too dark for that, I remember telling my younger sister stories. (She was fond of Mrs. Piggle-Wiggle, as was I, and I could recite our favorites before long.)

Now I don’t want to go to sleep, either. Yet again, chronic illness has unexpectedly returned part of my childhood to me, although it’s a distorted shadow version my stubborn summer resistance to sleep. It is the middle of winter and darkness descends, silky-quick ripples, over the urban landscape in which I live. I am limp with exhaustion and barely recognize my own face. There is nothing pressing in the next 12 hours, no papers to write or books to read that can’t keep. I have the coziest little sleeping nook in a corner of my graduate student apartment, and I love it. It should be so easy to go to sleep, so tempting. And it is.

But yet … I already slept. I took a nap. I had to, dropping exhausted into my bed, fully clothed. And I dreamed, as I often do now, that I was sick. It can be bad enough living it during the day. It is torture at night. Asleep, I can’t distract myself, can’t try to control the pain, can’t take drugs and stretch and remember to breathe just so. There is no way to keep the waves of nausea at bay. There is no escape from the pain. Even in my dreams, I am exhausted, unable to fully wake as people talk over me, help me, or berate me. I’m dizzy and I stumble embarrassingly into tables, unable to catch myself or do any of the other balancing tricks I’ve learned over a year of (often quite literally) hard knock study.

It’s not always like this. Sometimes I’m just normally sick in dreams, a good “day.” Other times I can fly and write music so beautiful that I wake up with tears on my face, knowing I’ll never be able to recreate it.

Yet more and more often, I’m sick in my dreams. Maybe it has to do with a flare, or increased stress, or those times when I roll over and accidentally hurt myself in my sleep. It happens. I shared a room on break and learned that I apparently talk in my sleep – and gasp in pain and cry as well. I believe it, now. At least when I’m properly awake, I can usually make sure I don’t cry or scream.

Beauty and horror both lie waiting under those fluffy covers. A yawn, and the dice has been thrown — I close my eyes and discover my fate for the next 8-12 hours. It turns out the monster under the bed was real after all, just a bit higher up than I had originally thought.

I don’t want to go to sleep.

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Happy National Pharmacist Day!!

My doctors know the topic of my dissertation. Their nurses could write an abstract. And the student health pharmacists? They could deliver a paper on it at a convention.

One of the many joys of being chronically ill is having to take lots of medications. On average, I see the two university pharmacists, who are wedged into a windowless closet yet somehow still function dexterously, once a week. It’s rather like gazing at those plants that mysteriously live on air. They work hard to make the hell of dealing with the wearing, wearying grind of dealing with medications bearable – and by helping me figure out the interactions of my various drugs, they’ve helped make it survivable.

I will readily admit that four days ago, I didn’t even know this day existed. I haven’t had much time, consequently, to plan a suitable surprise. But never fear! This is one of two appreciation days – there’s also National Pharmacy Technician’ s Day on October 16th. So if you aren’t going to be seeing your friendly neighborhood pharmacist today, no worries! You have another chance to make that pinata and order a cake.

Absurd Insurance Fun

It’s always so funny what insurance companies decide to cover and what they don’t. Here I sit, eating my Cream of Rice, watching the sleet turn the sidewalks to glass, and checking over the benefits statements that have accrued over my break. They’re so bizarre that I open up the 76-page explanation of my coverage (well hidden on the student insurance page and puzzlingly called a “certificate”) to find out what is going on with my claims.

Take, for example, compression hose. Compression hose! They’re like normal pantyhose, but on steroids. They are the mother of all uber-difficult hose to put on. The compression hose I wear are capable of squeezing my body as much as the low-grade g-suits worn by pilots. I have a prescription for them. They’re expensive. They don’t help *that* much, but I’m sometimes pretty desperate for even a tiny little edge. So I start squiggling into the things, shimmying my hips back and forth and trying to yank them up without snagging the precious fabric, all while lying on my back on the floor. It’s a performance worthy of an Oscar, even without the colorful cursing I sometimes throw in for free.

It’s not covered, though, because you know who else wears compression hose? Actual Oscar winners. Yes. Because starlets squeeze themselves into Spanx so they look good on the red carpet, my insurance won’t cover them.

Thank you, Hollywood, unrealistic societal expectations of bodies, and vanity.

Since compression hose can be used for non-medical uses, you see, it’s not covered. And so even if I have a diagnosis that supports wearing those things, even if I have a prescription saying I need them, and even if I think you’d have to be insane to willingly wear the things, my insurance company won’t cover a dime. It’s just an accessory to them.

To me, it’s 10 minutes of shouting “hu—uh! Scheisse! Elephant puckey! Fudgsicle!! Eeee—-argh!! huh-huh-huuurrgh….!” And at the end of it, no one is going to be taking my picture, because it’s not an accessory.  It’s not a fashion garment. It’s part of the difference between being on the floor as green as a frog or standing up in my purple hiking boots and eating dinner with my family.

The same thing goes for my syringes – what I use to give myself shots. Insulin syringes are covered for diabetes. I use insulin syringes too – they fit my hands better and are easier to use – but since I’m not injecting insulin, they’re not covered. It doesn’t matter that what I am injecting is prescribed (and even covered by my insurance). It’s a doctor-approved drug, not recreational pharmaceuticals here. But no matter. Right equipment, wrong medication and disease, so my syringes and anything else I need to get to properly inject myself aren’t covered.

I buy my vitamins  from an online company that compounds them for people that can’t tolerate the typical dyes and binders. I’m officially low on these vitamins and they’re prescribed by my doctor, but since they’re “supplements” and there are all sorts of non-network provider complications, they’re not covered either. Never mind that the ones I can get from the student pharmacy, the only place where my insurance does work without getting paperwork dating back to the Roman Republic, won’t work at best. At worst, the covered vitamins will make me sick and send me into anaphylaxis. Yet once again, despite the recommendation and prescriptions of my doctors, my insurance won’t cover it.

The crazy funny thing is, my student insurance is actually really good.

New Year’s Unresolutions

I really tried not to. I held off for almost an entire day. I didn’t turn on a tablet or a computer or reach for pen and paper.

I almost managed not to make New Year’s resolutions.

You see, New Year’s resolutions aren’t really a thang in my family. We keep our hopes and dreams private, and really prefer not to harbor them at all. Because if… if you do, that means that something isn’t acceptable the way it is, and that you hold some hope of changing it, and you will probably (read: almost definitely indubitably most likely positively) fail horribly at changing it anyway. Then you’ll feel doubly awful, because not only is something wrong, you didn’t manage to fix it, either. My family is probably one of the few to keep records not only for achieving New Year’s resolutions, but for breaking them.

*****

We learned a lot from wildlife growing up. For instance, my mom’s advice about things you couldn’t fix was to just be like a duck and let the water go over your back. Still, if you couldn’t manage to be like a duck, then you could be a wildcat instead, spit and growl, and use your claws. What can I say. It worked oddly well. We all learned how to growl like wildcats and, as a TA, I’ve found it’s remarkably effective at getting a class to suddenly mind. Some bit of the hindbrain is activated and overrides the rest of the system, telling it inexorably “FREEZE OR YOU ARE DEAD” and ….

The point is, hope is a dangerous thing. My family recognized that. How dangerous, painful, and crushing just a little ragged scrap of hope can be, though, doesn’t seem to be common knowledge. Hope is usually seen as a good thing in the present day.

That wasn’t always the case. The Greeks seem to have had a more ambivalent view. Hope could lead you to take foolish risks in battle, and it’s noteworthy that Hope was among the items in Pandora’s box – the very last thing, which she prevented from escaping by slamming the lid closed. Was that because hope was on the same level as disease and other evils? Was it left in the box to save mankind from hope – or from the negative aspects of it, at least? Or was it left in the box to keep it safe for mankind, a comfort always left in reserve?

*****

A few days before the New Year, I was lying there muzzily thinking of the next 365 days and what I needed to do. It was a daunting list. Like the year before, number 1 probably should be

SURVIVE

But after that, I found myself wanting to do things like become a better photographer, use my hiking boots for really real hiking, and not let my illnesses dominate my life. Along with finding jobs and steady healthcare and a place to live past May, which is what every graduate student faces every 9 months. But aside from that, of course…

Most people in the chronic illness world know the pain and the joy of hope. Of every community outside my family, they might recognize those dark muzzy thoughts as not resolutions, exactly, but tizanidine dreams (like pipe dreams, except by prescription only and with a side of excruciating muscle spasms).

I was hoping that my illnesses wouldn’t factor in quite so much in the New Year. Some things are getting easier to control. Over Christmas, for instance, I learned that eating pears with the skin on might result in extremely unpleasant allergic reactions. See? Now I don’t need to do that one again (unless under controlled circumstances to test it, of course). Dandy, all fine and lovely. And besides, my illnesses didn’t exactly dominate last year. I mean … these conditions are just part of me, and even if I hate them I don’t hate my life. So the collections of acronymed illnesses must not really dominate my life. But I really did want to have them not be so much of a factor in what I ate or drank, or where I went and how I got there, and how much time of the day was spent doing things to alleviate the illnesses I have or how much money I spend and …

*****

Fast forward to New Year’s Day. I wake up with a cold. I go back to sleep. I wake up much much later. I play around with cleaning my apartment and finally unpack from Christmas vacation. I take pictures of a bunch of medical stuff to do reviews on later, and I stagger around like a drunk for a bit, because having a cold and having POTS is not a combination from heaven but rather from somewhere a lot warmer and further south. I sort through medications, refill containers, and reorder a bunch of supplements and prescriptions. I decide that now is a good time to test the grocery delivery service. I try to figure out how I’m going to manage the next round of medical tests. I scrunch my face at a screen for a bit, trying to interpret the last round of test results.

It didn’t take long for that resolution to go “tonk” into the trashcan.

On the plus side, I probably topped the family record chart in the “unresolution” category. It’s like having a marriage annulled. You realized your mistake and you ditched that sucker as fast as you could. As a matter of fact, I made and destroyed this resolution so quickly, they wouldn’t have even had time to make up the betting pool. 🙂

My illnesses are going to take the time that they take. The only way I can let them not dominate is to be like Jane Eyre and declare myself to be free person and to have an independent will, not controlled by man or MCAS.

Despite the resolution going “tonk” into the nearest trash can, I let hope out of its box. That hope for a freer, less illness-driven future is still there, because there is always tomorrow. And although the rain it raineth everyday, and with it comes floods of folly and failures I can’t fix, I can still be like a duck and let it run off my back.

And if that doesn’t work, well, I can always growl like a wildcat and try again, too.

Christmas Preparations

You walk into the room. It is time to brace for the inevitable interrogations that are as traditional at Christmas as the cheese balls and stockings. You’ve prepared. You disguised yourself as best as you could, in complementary colors and careful makeup, but now it’s time.

You practiced in front of the mirror. It is almost worse than being told yourself, this moment when you have to meet your relations and confess details about your physical condition, correcting whatever has been heard over the grapevine. HIPAA has no place in the hallowed holiday halls. You drilled the pronunciation of your diagnoses like last-minute prep for a French exam. You carefully developed sketches for the more visually inclined in the crowd. You worked on eye contact and, above all, your confident smile, head slightly up, eyes crinkled just so. It’s not the time to show fear or anger or sadness, not here. You practiced how you loud you’d have to say it, over the rumble of dozens of other conversations. You thought of several variants — how you would explain it to the kids, to your grandparents, to your favorite aunt, to your annoying cousin.

You find yourself praying for some minor disaster. A cooking fire would be about right, or a power outage, perhaps.

And then you try to imagine yourself as an actress on the red carpet as you sweep through — “no, extreme yoga isn’t recommended for someone with joints like mine.” Each encounter with sympathy, pity, incomprehension, and sorrow lodges in your soul. You will know to whom the words “chronic” have weight, and to whom it will just be a meaningless pair of syllables. You will be able to recognize soon, from the slightly desperate looks and the rapid patter of conversation, those who are uncomfortable with a line of conversation they began and those who quite as uncomfortably are in a similar situation as you, even if the symptoms are the same.

Then partway through the jumble of holiday events comes a stunning realization, bright as the inevitable triple flash for the holiday group picture.

You don’t have to get this perfect. Yes, some might love you. Yes, many may care for you. Yes, you will do your best. But you are not a doctor, and they (usually) aren’t either. They are not the patient. You are. Your illness matters the most to you, even if it affects these others, with their holiday sweaters and decorated napkins. If you have to stop, you do. If you chose not to answer the unasked question, it is fine. If you deflect an intrusive interrogation, that is ok. If you decide not to take the offered packets of suspicious weeds, pills, powders, or crystals, it is all right. Possibly even better than all right.

You will go home, and if you take off your smile like a Hollywood starlet takes off her Oscars dress, that is all right as well.

 

Ana

I stagger down the sidewalk at 3:30 in the morning, nodding casually at the scrubbed and white-coated people stumbling along like I was. I cross six lanes of traffic against the light. There aren’t any cars and it feels like a ghost town out here. It’s cool and the drizzle, stuck somewhere between a heavy mist and a genuine rain, feels marvelous against my face. I cut through gap in the fence and walked down the middle of a tiny lane, startling a rabbit whose bounding white tail rapidly disappears into cloud and shadow.

I walk a few steps past my building’s entrance before doubling back to the door. I fish for keys, finally simply kneeling on the damp concrete to dig through my bag. I don’t realize that I don’t need my keys to my apartment. I hadn’t locked the door behind me when I’d left to find the firefighters and EMS earlier. They’d been pounding through the building in their heavy boots trying to get to me, and no doubt waking my fellow students. Or perhaps not; most had learned to sleep through sirens and screams a long time ago. I don’t realize that the I’d left the door unlocked until nearly 18 hours later. Instead, I burrow through the accumulated backpack rubbish until I find something that looks like my apartment keys, and I go through the motions of unlocking my door. They may have been the keys for my classroom for all I know.

Inside, the bit of me used to tracking over stone and sand can trace my evening in reverse easily. First I pass scattered Kleenex on the floor, strangely enough. Then a spent epi-pen cartridge on the floor just around the bend in the hall. The empty Spi-belt that normally holds my epi-pens is just inside the bedroom. Pages of a notebook ruffle gently in the breeze from the air filter, the emergency on-call number for the local student health center a spiky black uneven scrawl across one page. Over the bedroom’s worn brown carpet is almost-festive tinsel: the foil backs of Benadryl dye-free capsules. I can see all of it, trace it, know it — but in some strange way I can’t really feel or understand it. It could have happened to a completely different person.

There was a mostly empty cup of water on the floor too, but I drop my pack and head into the kitchen instead for a fresh glass. The trail continues. A medicine case, unzipped but only partially emptied. Empty vials for cromolyn sodium. Finally, the real culprit, sitting innocently on the kitchen counter: a plastic container of vanilla coconut milk yogurt. I don’t even touch it. I just get my glass of water and curl up on my bed to get warm and read a book.

***

I’m not even allergic to coconut, at least according to a blood test. Yet it was enough of a trigger to send my systems cascading into reaction, one after the other. Anaphylaxis. A multi-system reaction. The cause of my anaphylaxis is a little bit different than the usual IgE allergy variety: it’s thought to be the result of a condition that affects the responsiveness of mast cells. Those are the cells that actually release the histamine and other marvelous chemicals responsible for making you sneeze around your great-aunt’s cats or your brother’s cologne.

It was my first time handling it on my own. I’d had a normal graduate student day, and I’d forgotten to take a few meds and gone out to a restaurant for lunch. No big deal, I thought, right? It had been a full day, packed with errands and meetings and homework. All of this is what is considered “normal” by most of my cohort, and what I myself would have considered normal only a year earlier. It is normal no more.

When I started to have a hard time keeping my eyes open, I realized I needed to do what the poor resident on the other end of the phone was starting to recommend — use an epi-pen and call for help. This was my first time having anaphylaxis on my own. I’d been warned that the epi-pen might hurt a bit, but I didn’t feel anything. When the world started to return to normal — strangely enough, it hadn’t seemed all that abnormal before — I had to check and see the neat hole in the worn wales of my cords to know it had actually injected. A few minutes later enough of my brain had returned to realize if the world was suddenly making more sense, of course the injector had worked… and that perhaps I’d cut it a bit close.

It did happen to a different person, in a way. The me that staggered through the door that evening after a bout of anaphylaxis was not the same me that cheerfully opened up a coconut yogurt and started in on the next block of homework. I now knew I was operating in a completely different world, one in which yielding to the ghostly habits of past-me might mean disaster.

This is what anaphylaxis can be for me.

Disease Fatigue

I am tired of being tired. I am sick of being sick.

No, there was never a time when I was the opposite – happy and well-rested to be sick!

But the waves of soul-crushing weariness are worse than the ever-present niggle in the back of my mind that says “I am not okay with this situation.” This is not the physical fatigue, in its many different flavors, that comes from my diagnoses. This is a different beast.

  • I’m tired of medical paperwork, of sitting amid white drifting dunes of medical paperwork and sobbing a salty sea.
  • I’m tired of flaking out on friends because my body is flaking out on me, of feeling my hard-won “adult” reliability splintering away, mica under pressure.
  • I’m tired of drawers full of medicine; the half-sob, half-laugh and sick feeling in my stomach when I realize I use pill containers designed to last a week for a single day and they’re not quite cutting it anymore.
  • I’m tired of getting emails from doctor’s offices, because it happens so often that when the notification chime dings I’m starting to jump because it means one more thing
  • I’m tired of phone calls to doctors: I’ve heard the hold music so often for one hospital I can improvise a vocal obbligato over the top, and then cry because I can.
  • I’m tired of the adrenaline jolt when the hospital’s extension appears on my phone’s screen, of feeling hope and fear so intense it robs me of thought, leaving me gasping on the end of the line.
  • I’m tired of managing med schedules, of 4th grade all over again and the problem about the wolf, the cabbage, and the goat crossing the river… except instead of the goat dying, I’ll get messed up instead. Med A must be 2 hours after Med B, and without food. Med C will react with Med B. Med D must be taken with food. You can’t eat unless you take Med B. … it is exhausting, physically devastating to miscalculate, and it happens many many times every single day.
  • I’m tired of physical therapy appointments, when I feel woefully inadequate and physically exhausted from the most basic of things.
  • I’m tired of doctor’s appointments. It’s the endless procession of scrawled blocks of green on a calendar or reminder alarms the day before, reminding me yet again that I am ill . . . as if I could ever fully forget. It is crying from the continual fight to get to those appointments, and the hope they bring of a solution, and the despair when they don’t. And finally, the black hopelessness when the appointments dwindle from a flood to a stream to a trickle and you are left alone in the same fight.
  • I’ve very tired of tests, of calling a friend yet again for a ride, because you’ll be to ill to take care of it yourself… and calling another, when that first choice is busy with their own life, and then a third.
  • I am so extremely tired of hospitals. It’s quaking terror disguised with a grin and a selfie of patterned gowns and lights and monitors and cuffs and questions.
  • I am tired of having to think about where I am going to stop and rest. There is a profound mental, physical, and emotional exhaustion from simply taking a shower or grocery shopping, and knowing I should be grateful for still being able to do even those little things with perhaps some adaptations. And then crying when I don’t feel very grateful, because I want so very desperately to not even think about if whether or not I can make it across the store to get the milk I forgot on your first pass through. I continually map routes for how I will get from point A to point B; it’s Everests and Death Valleys and Northwest Passages all disguised as steps from the parking garage to the sidewalk, or a big cobblestoned hill wrapping a half mile to the next classroom.
  • I’m tired of reading medical research. It’s holding back the thought that n=me, and for every statistic that had this reaction, that did not respond to treatment, that had recurrence, this is me, a human, not a number… and fighting through because of knowing that if I’m not informed, I won’t be able to defend myself against the doctors who are uninformed, and if I don’t advocate for myself, I’ll end up even more sick or hurt than I already am.
  • I’m tired of feeling awful, of not being able to make it through an errant “Weight Watchers” commercial without grabbing for a bucket on a bad day.
  • I’m tired of hurting. It’s a spear made of ice, flickering with flame, plunging into me, as I smile at the girl telling me the elevators are only for staff, while I talk her through disabled student access and NO I DON’T HAVE TO TELL HER WHAT’S WRONG WITH ME TO TAKE AN ELEVATOR INSTEAD OF 6 FLIGHTS OF STAIRS. (And for the record, the next time I came in, she apologized and was very kind.)
  • I’m tired of not knowing. I have about 82% of my symptoms explained by diagnosis right now, with the feeling that could change to 0% at the whim of my body or a doctor the next day.
  • I’m tired of being scared of when the next bad thing will happen – when the next diagnosis comes, when the next crash will happen, when the next time allergic reaction hits, of the uncertainty of it all. It’s that feeling of dancing with the Grim Reaper, a slow, macabre waltz, whenever I risk eating a food I didn’t prepare myself, and even then — is this going to be the time anaphylaxis hits? Will I have enough time to counter it?

Disease fatigue. I heard it called that once, like generations ago there was “battle fatigue” (before the term PTSD/PTS replaced it). Disease fatigue, when the burden of sickness, quite apart from the real fatigue of a disease itself, is overwhelming.

In a strange way, the name itself gives me hope. Not the term itself, no — fatigue in the world of disability is not always, not even usually, something that goes away with rest. No, it’s the very act of naming that is important. Something named can be recognized, and have boundaries. Something named can be endured, and eventually, even if today I can’t actively battle, it can someday be fought.

And like most things named, it too shall pass.

 

 

In Which I Am Unfair: Vignettes in Campus Ableism

“Oh, he’s at the hospital again,” one of the women in the little gaggle of people walking past my table announced. “Again?” another of the business-wear group commented. Some of them had changed out of their dress shoes to beat-up sneakers. A lunch group or something like it, off for an hour’s break. One of the guys laughed. “He’d better come back with like a broken leg or something this time!” The rest of the group laughed too. “Something big.” “Yes, it doesn’t count unless it’s a full cast!”

I was on the top floor of the building housing a variety of student support services and academic judiciary offices.The little group was joking, in the rather mean-spirited way of much younger and less professional people… say, elementary school students. They just happened to do it in front of a student with invisible disabilities. Nice to know that their colleague’s misfortune was thought of so compassionately, and that their understanding of real injury and illness was restricted to the immediately visible.

************

“She’s always taking medications. Obviously, too, like taking a lot of pills at committee lunches or the department party. Something’s wrong. I mean, a lot of women take a pill every day and all, and that’s fine, but this is a bunch.”

This conversation happened with a colleague, who tried to backtrack when I (couldn’t help it, mate!) pointed out I took a lot of medications as well. Too bad it ended up with him even deeper in it than when he started, of course … his bumbling efforts were more humorous than hurtful, especially as there were a few other women who cheerfully joined in and helped him dig himself deeper every third word.

************

“I know your dietary restrictions – they are very familiar to me too, because I have some – so I’m sure you can find something to eat here because I can.”

Another very kind effort from a very kind person who still couldn’t wrap her mind around the fact that two people with disabilities might have very VERY different disabilities and paths through life. Instead, everything had to be viewed through the lens of her illness. She never really did get that graduate students  are not usually protected by the FMLA or that mast cell diseases are much different than avoiding spicy food after 3 pm.

************

“Oh, so you mean there’s really something actually mechanically wrong? Oh!”

A college administrator who suddenly seemed to understand and be much happier to grant my request for help restructuring my classrooms. I couldn’t help it – I rolled my eyes. Fortunately for me, he was facing the other way. I do so love it when other types of disabilities are judged as less “real” than physical ones, or when it has to be some type of injury that the administrator relates to (like dislocating joints, for example, or sprains) to count. I’d already explained POTS and MCAS by that point, but those apparently didn’t count as “mechanically” wrong. It wasn’t until I remembered and explained JHS-EDS 3 that everything seemed to suddenly click. I probably need to work on my communication, but sometimes I just really don’t want to … 

************

I and another student are seated, slumped and exhausted, on those orange carpet-covered chairs common to 75% of student waiting areas. We’re tutors, nearing the last shift of the day, waiting for our respective students. They’re so late it’s looking like we are not going to be tutoring after all (read: not getting paid after all, either). I’m feeling a bit down about this. The other tutor wonders why I’m upset about having free (unpaid) time, and I explain I missed my bus and had to pay for a Lyft into school so I could work that evening. I at least wanted to recoup my losses.

Tutor 1: “Oh, where do you live?”

I told the other tutor

Tutor 1: “Oh, that’s so close! It’s not far from campus at all. You could have walked that!”

I was tired. I didn’t really want to go into explanations. “No, I can’t. Definitely not in time to get here for work.”

Tutor 1: “I don’t understand. It must take as long to drive as walk. But I guess your legs are shorter than mine!”

Really, really didn’t want to go into it … but I wasn’t much shorter than her, and the way she was now staring at my legs meant she’d figure that out soon. I didn’t want to be categorized as being lazy, either, so … “No, it’s not that. I just really can’t walk it at all, honestly.”

Tutor 1: “I don’t get it.”

I gave up completely. “I know I don’t look it, but I’m actually very sick. I cannot walk from my apartment to the campus in time for work. It’s not contagious, so you won’t catch it, don’t worry.”

Tutor 1: “Oh! I never would have guessed, because you look fine!”

A classic response. At least I already have a selection of answers pre-drilled, and wonder of wonders, here came a student. “Um, yes, I know I often look ok, thanks very much.”

“But you always seem to manage …

Thankfully my student had arrived and I was rescued before I had to explain that my ability to tutor was not proof that I wasn’t sick.

*************

 

Ableism means discrimination in favor of able-bodied people. It isn’t a word I particularly like, because everyone’s definition of “discrimination” tends to vary just that little bit, and it’s so very easy to accuse someone of it. It can range from systemic abuse (such as a corporation not following ADA law) to casual comments about how inspirational disabled people doing ordinary things are. (In my case, I’m actually just fine with being told that I’m inspirational or heroic, because most of the time my mind is screaming at me that I’m a failure. If there are ever other voices chiming out a different message, I’m usually far too grateful to be offended.)

I’m being unfair here, because not only are all of the above based on real things that happened to me this semester, most of the people involved had no idea what could have even been construed as wrong about their behavior. Despite the bit of me that feels like a small tattling child, this is part of the reason I decided to write this post – because some of them will not realize what they did was quite wrong. In this light, in this form, it’s easier to see that endlessly interrogating someone and then using her ability to complete her work and look physically put-together as a marker for disability is wrong. Judging someone on taking the medications they need to survive is wrong (or having the number allowed be related to their sex!). No one in in a professional setting especially should joke freely about a colleague’s physical status – even if that colleague might have ordinarily joined in on the joke.

In the end, the best path forward is probably one I struggle with myself continually.  Wait, and then in the depths of the smallest square of privacy you can find, think about your latest sly witticism. If you wouldn’t want it said about yourself, then don’t tell the joke out loud to Mr. Oral B.

 

8. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

Some problems are the same that every student with disabilities faces when trying to study: I wish they knew how hard it was to get to class on time when I have to wait for elevators or take a different path. I wish they knew that flickering class lights can give me migraines. I wish they knew that it’s not that I’m uninterested, it’s just that my body language conveying my interest is going to look different from everyone else’s. I wish they knew that it they don’t have a lot of choice about whether to actually do agreed-upon accommodations or not — if there’s paperwork and it’s been deemed reasonable, that’s that. I wish they knew that outside class activities are going to take me twice as much work, or might even be impossible. I wish they knew that I can’t eat food when it’s brought in to class, for whatever reason. I wish they knew that being in their office when they’ve just smoked or put on perfume can trigger an allergy attack. I wish they knew when they decide to take the class somewhere else besides the classroom — be that a walking field trip, class on the lawn, or a stroll to the local pub for seminar — I know I’m either going to cry at the agony that puts me in or bawl from the shame of speaking up and asking for a ride, another route, or a different place.

… Everyone else wants to hold class in the pub. Why can’t I just go along? Why can’t I be normal? Why do I have to cause trouble, be special, make more work?

I wish they knew how badly I want to be normal and simply go enjoy seminar in the pub with everyone else.