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.

 

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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.

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

I wish my professors would realize how surreal school sometimes seems to me.

At first, you see, it was hospitals and doctor’s offices that felt surreal. My future life as I imagined it could and did crumple and blow away like dust and ash in rooms with cheerful accent walls, posters of kittens and skeletal systems, and crinkly paper robes. Repeatedly. It was surreal.

Then I spent a lot of time in hospitals, listening to the banter of the night nurses and the jokes of the janitors. Those places became, if not comfortable, at least familiar. School felt surreal then, with its very artificial deadlines and rules. In the ER the deadline for the man who had been hit by a car was real, the rules for resuscitating a patient in cardiovascular collapse because of anaphylaxis were real. School was an absurdity, ridiculous in the amount of effort and stress being expending over 7 pages in Times New Roman that would only ever be read once.

Sometimes it all feels surreal, especially when I jump in between a world where almost everything is life and death to a world where everything is made-up and meant to teach safely. There isn’t a lot of room in my life between those two poles for normal living. I worldjump instead, losing a bit more of myself with each trip until I feel like a ghost, out of place in both planes.

Oddly, the place where there is life and death around every curtain is also the place where dark humor reigns, but the place where there are tests and quizzes behind every classroom door is sometimes taken oh so very seriously. There’s not anything to be done about this — it’s up to me to manage the worldjump. I just wish that my professors knew.

 

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

I wish they understood how and why graduate life can be isolating for someone who is chronically ill.

Professors might reminisce about the good ol’ days studying together over drinks, scraping together papers last minute, and doing rambunctious and borderline insane physical stunts. That’s great. But it’s not going to be my life. I can’t rock climb, I can’t go out drinking with my fellow students, and I can’t even be designated driver anymore. I can’t stay up late partying, or even just stay up late most of the time. Even if my mind wants to party the night away, my body needs a heating pad, ginger ale, meds, and sleep.

I’m seen as insular, not engaging with graduate life, non-participatory, etc., and by more than my cohort (most of whom actually understand). Professors have pulled me aside to ask about why I’m not hanging out with the rest of the graduate students. I have gotten kindly meant tips about everything from battling depression (because I’m pulling away from people) to ways introverts can have fun at parties. The social side of professional academic life is important, and professors are watching to see that we’re developing those skills and representing the department well. If I’m not at the 9 pm-12 am conference reception, I’m seen as failing that unspoken test of graduate school life. Furthermore, as a graduate student in the fine arts, there are often alluring late nights of concerts, talks, dinners, operas, showings, and presentations. But I really have to pick and choose which ones I even try to attend, and I can’t do them all. The physical cost is just too high. I still have to teach at 9 am the next morning.

In this age, there are other ways to make contact with people. There are ways to fundraise, to network, and to present research that don’t require robust good health. The field needs to recognize that these options are legitimate and begin to make accommodations a matter of course. Professors need to realize that not all routes through graduate school are going to resemble their own — but until then, I’ll probably still be stopped and interrogated every couple of weeks about my life choices.

I wish they’d realize I’m not deliberately a hermit — I’m just sick.

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

I wish my professors would realize that if I’m quiet, curled into a ball, and white, it might not be because I’m emotionally upset. Even if there are tears in my eyes and my face is screwed up! More likely I’m just trying to get through class without screaming in pain, throwing up, or passing out — and possibly all three at once.

I’m not a drama queen that has a bad breakup every week.

I’m just chronically sick.

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

I wish my professors would realize that my life as a chronically-ill student outside of college is a lot of doctor’s appointments, PT, clinics, testing, procedures, trips to the hospital, and other usually painful and terrifying things. A lot of these appointments were booked months before staff meetings were scheduled. On the flip side, I’m sometimes called into a cancellation or an emergency appointment quite abruptly. Either way, it can play merry hell with scheduling.

I honestly never intend to ride rough-shod over anyone’s carefully planned day. We all have lives, after all. But if I say “I can’t make it that day, I have an appointment,” it means I can’t make it. I shouldn’t have to defend myself further by telling what kind of appointment it is, and I certainly should not be required to go into detail and defend the necessity of medical treatment. I should not have to refuse to reschedule a cardiology appointment to attend a 15 minute staff meeting about the answer key for a quiz.

I am also not going to feel — or be made to feel — guilty about the decision to prioritize my health. My lack of guilt can be interpreted as defiance. I’ll admit it, sometimes there is a touch of defiance in there — I hate having someone attempt to guilt me into feeling or acting a particular way, and so I find myself automatically bristling and pulling out my best teenager “oh YEAH?” complete with eye roll … at least in my mind. 🙂

But usually, my attitude is much more the result of a certain emotional numbness than defiance. After all those appointments and procedures, I don’t have a lot of emotion left to either bravely defy or convincingly grovel.

I know that as a student with disabilities I may unfortunately have more absences to deal with medical emergencies than able-bodied students. If I could change that, I would. I wish that my professors would realize that I would far rather be sitting in the staff meeting, planning out the answer key, than sitting in an exam room being given another life-altering diagnosis.

 

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

Graduate assistants often function as the dog’s bodies of a department. We fetch, carry, grade, make emergency extra copies, and cover shifts and lectures. If something needs to be put on reserve or the guest speaker for the conference needs a ride to the airport, that’s a job for the graduate assistant pool. We’re expected to learn the ropes this way. Sometimes it is fairly useless drudgery, chores that just have to happen for the craziness that is an academic department to remain fixed on planet Earth instead of spinning off into the aether. 🙂 Other times it is genuinely exciting, professionally stimulating, and career molding … but to be honest, there’s usually a lot more of setting up tables and proctoring makeup exams. My department even established a 3 hour service requirement (in addition to any other teaching/assistant tasks we have) and a graduate pool. Any professor can submit a request, and then we of the pool are all duly reminded of our required hours and offered this great opportunity to fulfill them by simply…

As a graduate student with chronic illnesses, I have a hard time jumping whenever a professor demands it. Actually, I can’t really jump at all! I can’t carry heavy loads, I can’t run places, and I can’t help move heavy pieces of furniture around to set up for events or class. I have to take medications on a set schedule frequently, so rearranging my day on the fly to substitute teach class or cover a shift is also complicated. To “run and make a quick copy” involves no running, for starters. It does mean mentally mapping out a building to find a safe route to the copy machine and then taking this often more time-consuming path. It means waiting for elevators and struggling with doors. Then finally, it means waging the battle everyone faces: beating the always-finicky department copy machine, large enough to swallow a small GA, into submission 🙂

In my building, “quick copy” suddenly turns into 20 minutes. No one is very happy about that.

So I wish that professors and the administrators of graduate programs realize that not everyone is going to be able to do the typical graduate student tasks. I wish they realize that the reason they are not getting notifications from offices of disability services about this is NOT because they don’t have graduate students with disabilities. It is because there is no mechanism in place to address this situation. Graduate student chores are not a defined job activity. They’re not directly associated with classwork. Until there is a conflict, the ombuds office is of limited use. It is a gray area, and the only way for me as a student to deal with this dilemma has been to notify each and every person individually. Most of those professors have no idea how to proceed in a situation like this, and there can be a lot of varied responses of differing degrees of appropriateness. It means a lot of confusion and missed opportunities. It takes a lot of time.

I think it’s possible for departments to use their graduate students with disabilities in ways that will still be beneficial to the department and not damaging to the student. It will require more thought. It will require more planning. It will require a lot more tact.

It can be done.

Dysautonomia Week – Wednesday

WEDNESDAY

1:30 am – I decide that a quick bath might cool down the flush/rash and would make it so I can breathe, since nothing else is working.

3:30 am – I lurch from a doze, coughing. When I flick on the bedside lamp to fish for the Kleenex box that has gotten knocked out of reach, it looks like my hand is trailing golden cobwebs. I’m no fan of spiders, so I try to swipe it off. I don’t feel anything, and there’s more cobwebs streaming off my other hand. Maybe my sister’s hair? I think, as I grab a Kleenex. But no, she hasn’t even been to my new apartment, and there isn’t any way I’m dripping her hair. It doesn’t feel sticky like cobwebs, or even stringy like hair. I blink, and light shatters and breaks. I figure it out and drag my entire arm through the air. This time I see the whole thing – a shadow arm, following along behind, a barest lag from the real one. The other arm does the same thing. “Cool,” I breathe, swooping my arms through the air. This whole process sounds like it took ages to figure out, but really, it was about 5 seconds. I play with the light a little longer, trying not to pay attention when I blink, because the shattering starfire is almost painful. It’s fun, and it would be marvelous to conduct to, but I’m super exhausted and I have a headache pounding away on one side of my head. If I wasn’t so tired, I’d probably freak. I’m tired, so I just tune out the neighbors arguing in the hall and go to sleep.

7:13 am – I wake up to the knowledge that something’s not right. The alarm has been beeping for 13 minutes straight before I heard it. It takes me a while to figure that out. Longer than it took me to figure out that it wasn’t cobwebs but illusory palinopsia this morning. I slap it off. The other TA is covering the 9am class. I do manage to take meds.

9:47 am – I wake up again. I have vague memories of trying to turn off alarms or whatnot. But nothing definite. It takes a lot of work to focus on that clock. I know I’m not going to make the 10 am staff meeting now. I pull out my phone and try to message someone, but my head keeps hitting the pillow and there’s two bloody phones and nothing is in focus, at least nothing that has a light source. I try to set a timer so I can try again in a bit. Google helpfully responds to voice commands.

10 something… – I’ve given up on timers and texting. It seems like I’ve ordered the phone to set a new timer a couple of times now, but it’s foggy. I give up in earnest.

12:45 pm – I wake up. Yet again. The world is much clearer. I’ve also completely missed that staff meeting. Last night I’d emailed the professor in charge of our course and let her know I might not make it. I have 4 different messages and about 10 emails about what I missed. I guess that’s not too bad for having been out of contact for half a day.

3:30 pm – I’ve been trying to play catch-up. I’ve had a shower and taken at least the allergy meds that I missed taking at breakfast. I’ve been flaring even with them, and once when I missed a day of allergy medications I went into anaphylaxis later that day. (Right now, we (meaning my medical teams and I) don’t really know what causes my anaphylaxis. So. Allergy meds it is, to try to tamp down what is obviously an allergic reaction that had me get bumpy hives on my legs during the shower.) I’ve contacted the other TA and tried to sort out from the mess of emails what happened this morning and what I need to try to do. Somehow three different students with three different problems have gotten conflated into one being in the professor’s mind, and I dash off a few new emails and forward old ones to try to sort out that problem. Now I’m on hold trying to handle the next item of business … why did I have light trails to play with at 3:30 in the morning? The hold music is… actually not that bad. 🙂 And here I said I’d be whinging about it.

6:00 pm – I would be fuming out my ears if they weren’t so congested! I thought, light trails. New symptom. For new symptoms, you’re supposed to call “your doctor.” I don’t know which doctor to call, so I’ll run it by primary care first. As a student, my “primary care” comes through the university student health services (or as I lovingly call them, the “docs in a box.” They’re working from trailers while their building is being renovated). As a more complicated case, after a long battle, I was assigned to one doctor in particular for everything not urgent. First, though, I have to navigate the normal system. The clinical staff member who answered the phone isn’t someone I know, and when I explained I had been seeing light trails and needed to know what was going on and who to follow up with, she started using the Socratic method of questioning. #whenineducation

Nurse: “Well, what do you think you need to do?” Me: “Um, I was sort of hoping you guys would be able to help me figure that out. Do I need to call cardiology, neurology, or make a student health appointment? What should I do if it comes back?” Nurse: “Well, which one would you like to follow up with, cardiology or neurology?” Me: “….  That’s what I was hoping you could tell me.” We eventually decide to start with an appointment at student health. And they have no idea about the drug ivabradine, are not going to look it up, and have zero clues about anything. She’s happy to transfer me to the appointment scheduling line.

On the appointment line: “So what is the reason for your visit?” Me: “I had light trails and after-images. When I moved my arm, it had an image that lingered and followed after, trailing …. like what you see in a superhero movie where someone is running really fast.” Scheduler: “What?” Me: “I know, weird huh!?!” Scheduler: “Like what happened again?” Me: “Oh.” I repeat it, then explain a few different ways, bring up that I’m not sure whether it’s a drug reaction or a new migraine symptom, and wait. Scheduler: “Ok, so I’ll put down the reason for your visit as “headache.” Me: “No! It’s not a headache. It might be caused by one, but I don’t know. I’m seeing after-images of things when they move.” Scheduler, still trying hard: “So vision problems… like eye pain?” Me: (giving up) “more like hallucinations. It’s not hallucinations – these are real things – but hallucinations is the closest.” There’s silence. I don’t know what it is the poor doctor tomorrow thinks she’s seeing me for, but I do have an appointment tomorrow.

So much for this being a doctor’s appointment free week.

I also called and left messages at both cardiologists too, because I figure that’s where I’ll end up anyway. Might as well get a jump on it while I’m on the lines.

A call to the UPS store to arrange for them to hold a package for longer until I know I can drive safely to pick it up. I call the place that was supposed to work on my car tomorrow too. By now I’m relieved that it’s close of business and I’ve finished the phone calls, but my email had been relentlessly dinging the entire time. I have a complete new stack of marching orders from my professor. The syllabus is getting rearranged, discussion sections turned into class lectures (but delivered by the TAs), and (of course) the professor and I don’t see eye to eye about some classroom and grading issues. I know as soon as she makes a change, I’ll be hit by responses from the other side of this equation – the students. I’ve been off Ivabradine for about 24 hours, and my heart rate is already starting to fluctuate. Or it’s just stress and ire, this time. Normally it’s not so much of a problem, but I’ve spent a lot of time this week trying to correct errors.

I’m going for a walk.

10:00 pm: I had a nice walk. I talked to my mom, and she was a fount of wisdom about how to deal with my dilemmas as a TA. I talked to my sister, and she was sympathetic. I watched the sky streak, this time in the normal way, with the beautiful colors of sunset. I managed over a mile, and if some of it was spent leaning against lights waiting for them to change or railings, or if I staggered at the end like a drunk, what of it? I know the Ivabradine is still helping, because I didn’t get over 120 bpm, or at least not by much. I’m eating Cream of Rice for dinner. I tried Fritos earlier, and while it helped me regain my equilibrium after the walk, I also noticed I had a splotchy rash beginning. I really hope I’m not losing corn as a safe food. My desire to be a good TA has been pretty well squashed for the day … and my conscience tells me that I wouldn’t be a good TA right now. So I’m going to cue up a TV show and load my med containers with the 23 different types of drugs and vitamins I have to take in order to do what I did today – get up at the crack of noon, deal with people coherently, feed and clothe myself, and walk a mile. Disappointingly, for someone with dysautonomia, that’s actually doing pretty well.

If you’re well and reading this, you might try pestering your senators and congressmen or congresswomen about not cutting funding for research for rare diseases or finding a cure for dysautonomia.

 

 

Dysautonomia Week – Tuesday

Gnocchi with smoked salmon in a garlic (lactose-free)-butter sauce

6:56a – I wake up before my alarm, again. Same routine of choking and hacking, thanks to this cold, except worse. I’ve gotten about 5 hours of sleep, I think. Way less than it feels like I need. I move to the alarm slowly this morning. HAH. One mistake less. This means I’m moving earlier. I even take a shower, turning the water up hot for a bit and sitting on the floor to enjoy it. Heat means vasodilation, the fancy term for my blood vessels opening up wide and letting gravity pull that oxygen-laden red stuff away from my brain to my toes, which really don’t need that much. Thanks to meds, it’s not bad this morning, and I’m sitting more from exhaustion than from graying out. I like this. This is good. Also, the water goes cold pretty fast. The hot water is free in my apartment. I think it’s the management’s way of making sure we don’t complain when it doesn’t last that long in the morning, because after all – it’s FREE!! By the time I finish steaming my sinuses, I’m feeling like I can manage class.

8:20a – I’m running late but that should be okay. The shuttles are staggered, and I’m near 3 different stops. I really don’t want to drive.

8:23a – I spent several minutes just staring at handy bus app. See, the shuttles here are on a “continuous loop” – there’s no set schedule. I can’t reliably think to myself each morning “the shuttle leaves at 8:13. And there’s another at 8:24 if I miss that one.” Instead we get this handy app that’s supposed to show the real-time location of the buses (hint: it doesn’t). The staggered looping schedule should mean that a bus is near me about every 15 minutes or so, but today all 3 are in a tight little clump. They’re not going to come my way for almost 30 minutes, and then it’s a good 15 minutes (depending on the route, a little longer) into campus. On Tuesdays a friend parks his car behind my garage. He’s left me his keys just for situations like this. I grab my gear and try to make sure I think. Slow is smooth, smooth is fast…

9:00 – I set up in a classroom I’ve only taught in 2 times before. There’s a table and a chair near the podium, and the classroom is small enough so I should be able to sit instead of stand. I yank and tug on cords in a manner that would make most IT folks cringe, until I can actually put my laptop on a corner of the table and stay seated for most of the class.

10:05 – I SURVIVED!!! I had to sing Home on the Range – very badly, with almost no voice – to my class, who didn’t know that piece. I taught mostly curled up in the chair, slugging tea, but for all that it didn’t go too horribly. The sound worked, as long as it was through the crappy projector speakers. (The other TA’s projector broke.) I played about 4 measures of a Bolcom rag, also very badly, standing up over a classroom upright piano. And yes, that piece of “tech” worked! I didn’t have the coordination to play standing up and stomp at the same time, unfortunately. Check out the piece if you have 5 minutes and 34 seconds to spare. I LOVE it! https://www.youtube.com/watch?v=MzorssRJce4

And now there is the after-teaching crash coming. The floor is so wobbly. It couldn’t be me. It must be the floor. In the bathroom I notice that my neck and chest are covered in bright red splotches, some of them starting to bump up a little. Oh. Well.

11:30a. Went home. Had to pay $7 to spring my car from the garage, because talking to people and a long line of cars trying to exit meant that I slid over into the next time bracket. Moved the cars around at my apartment again. I should just drive over to that pharmacy and pick up the meds and that binder, but I’m so tired. There’s no way that would be a good idea, or a safe one. Had Fritos for “breakfast” because even though I did have some time this morning, I was still feeling too sick to eat. Then I’m crawling into bed. I still have a few bright red splotches.

2:30p: Nap didn’t happen. Between a few phone calls, emails, canceling my evening jobs, and a package being delivered, there wasn’t a chance. I did get to lay down though, and that makes me feel instantly better. I also found out that one of my two Mighty articles was featured on their Facebook page!! I’m thrilled. I watched a bunch of movie trailers and videos of people doing amazing things with their bodies on American’s Got Talent while reading through a workout guide my new cardiologist gave me last week. I’m hoping the clips inspire me, and they do. I should be working out right now, but it seems like being sick is regarded as an okay reason not to work out according to the guide, and my body seems to agree. I get a phone call from the cardiology nurse: my meds are getting moved to the right pharmacy (yes, I have three different pharmacies to keep track of). I’m also supposed to go to the children’s hospital for some testing. And here I thought that this week was going to be chill.

6:30p: I’m outside, sitting on the asphalt in front of my garage, grading. There’s sun. It’s nice, but not really hot. I start to nod off over the last few tests. There’s birds singing, people going back and forth, and although I’m running low on Kleenex, this is great. I might make it through this bunch of grading after all!

9:38p: I’m so not going to make it. I went inside when it got cold and kept grading, but I just kept nodding off. I’m making some quick gnocchi for dinner because I feel bad about just eating Fritos and chocolate for the rest of the day (as I should). But I’m really not hungry. Cold, dysautonomia – take your pick. But food just isn’t what my body wants. It wants a sauna and someone to carry me around on a liter, dripping fruit-and-herb infused water into my mouth every 45 seconds, and cold meds I can actually take. I am trying to remind my body that I am not some romanticized Western idea of an exotic Persian princess from yore, or some such nonsense. I’m a grad student in hiking boots and neon green compression socks, and I have 8 papers to grade and my med containers to refill for the week before tomorrow at 10am. And that’s the timer for dinner.

1a: Going to stagger off towards bed. I’ll finish the other papers tomorrow morning, when hopefully it will go a little faster. I’m exhausted, but I only have to make it to 11:30 tomorrow morning. There’s nothing that pressing for Wednesday afternoon, although there’s certainly things that need to be done. Only 10 1/2 more hours, and I’m in the home stretch of the week. Something’s definitely triggered my allergic response, though – I keep breaking out into a flush/rash, and there’s blisters in my mouth. I usually get those with cooking oil (fries in soybean oil, or chips in sunflower/safflower oils, for instance), but I don’t know what I ate or did that could have triggered it this time. Maybe that’s just a sign of an exhausted brain instead of a new food trigger. My hope is for the “exhausted brain.”

I also Googled the test that I’ll be doing at the children’s hospital – the nurse actually told me to, in an attempt to figure out how much it would cost, so this wasn’t just a case of overcurious grad student. Among other things, it will test for cancer. Again. I really cannot count how many times I’ve been tested for cancer. I had to punch down that bubble of “freakout!!” that rose up blaring from inside me, but I’m practiced at it now, like a baker punching down bread dough after the first rising. I’m also exhausted. I might actually worry otherwise, so being completely limp from POTS, a cold, and fatigue really does have a silver lining.

Dysautonomia Awareness Month – A Week in the Life of POTS/VVS

INTRODUCTION: DAY 1

I faced a moral dilemma when I decided to write about dysautonomia awareness month. You see, whenever I look at a calendar, I’m struck by all the “XYZ” days we have. I have to try to keep track of staff appreciation day and crazy hat day, and then there’s breast cancer awareness month and rare disease day and a million others besides. This is of course in addition to the bizarre daily grind of life as a disabled graduate student — the never-ending stream of doctor’s appointments, staff meetings, and paper grading deadlines. After awhile, the sheer number of events that are supposed to be important actually does the opposite. They all run together in my mind and become indistinguishable, blurry, and meaningless.

As I stumble across the bumpy, hilly bricked main walkway on my campus, struggling to keep my balance on the uneven surface, I’m bombarded by shouts from a dozen different college groups. They want us to volunteer, to co-op, to donate money, or to simply wear a pin for the rest of the day about some issue about which I’m woefully ignorant. A lot of them are indeed for very worthy things. And sometimes I realize that I don’t care about them all, either – certainly less than half of them half as much as they deserve to quote dear Bilbo.

That is, of course, until it is my day, my week, my month. And all of a sudden, advocacy and awareness and attention-grabbing events all seem so much more important and urgent.

Hypocrite, my mind sneers at me. What sort of human being am I, that I so casually walk past a healthy, sugar-free bake sale to support the dentistry students going to Mexico to provide free dental care? Am I a horrible person because I don’t give a dollar and buy a treat (which I will probably be unable to eat and have to pawn off on someone else, but still!) Why am I such a hypocrite, that I think there are too many awareness days one minute, and then not enough one minute later?

The problem is information overload, emotional fatigue, and just sheer lack of time. It isn’t really that I don’t care, especially if I give myself a minute to think about it. I do very much care about dental care in Mexico, about pediatric cancer, and about the after-school music programs. I just can’t spend the emotional energy to empathize with it all, and I certainly can’t do something about everything. There isn’t enough of me. It isn’t hypocrisy when I don’t throw myself into every worthy project that begs for attention – it is simple self-preservation.

That still left me staring at the little turquoise ribbon and the words “Dysautonomia Month.”  This series is a result of that decision: that no, advocacy of one thing does not make you a hypocrite for ignoring the others. I can write about what I know. So for the next seven days, because I have far too little time and attention to last an entire month, and besides, it’s really not that interesting – I’m going to instead write about what each day is like living as a graduate student with dysautonomia (among other conditions).

I will also put up pictures of a some really amazing butterflies, too. I promise.