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.

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

I wish some of my professors would realize how horrifically expensive it is to be a chronically ill and a graduate student. I can see it on their faces as I try to fit in a few more hours of work or pass on attending conferences. “But there’s grants that cover some of it,” a few might protest, or “shouldn’t you be writing your dissertation instead of working?” The kinder ones also mention things like “knowing you have to eat” and “student budget.”

I spend literally thousands of dollars each year in medical care. Even once I’ve paid for my insurance and met the deductible, many things that I need to function — including medical devices —  aren’t covered by my student insurance. Then there are the countless other things that add up: Lyfte or Uber, on days when I can’t drive and public transit falls through; crucial supplements; more expensive food as I become intolerant to basic cheap staples like ramen or peanut butter; even delivery costs for things when I can’t find a way to get to a store or a distant compounding pharmacy. It’s not that I’m not managing my money, or that I’m not trying to save, or any of the other common financial tips. (Saving for a rainy day when you are constantly, chronically ill … it’s not a “rainy day,” it’s a monsoon that will last the rest of your life.)  ‘

It is just very expensive to be sick.

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.

Birthday Jubilation

Tomorrow will be my birthday.

I don’t write my birthday down on the calendar anymore. I put other people’s birthdays down on the calendar without hesitation. I even schedule reminders on my phone’s calendar, and it politely counts down the last 7 days until the celebration. Somehow, I can’t do the same with mine.

It’s not because I’m dreading growing another year older. It’s not because I think it will be a depressing day, full of regrets that I’ve lived so many years but have yet to fulfill my 4 year old self’s dream of climbing Mt. Kilimanjaro, or some such goal. It’s not because I think that birthdays are overblown affairs. Actually, I enjoy and celebrate birthdays with a zeal that borders on the absurd.

I don’t put my birthday on any of my calendars because some bit of me is afraid that if I put it down, I’m expecting it to happen. Somehow, it feels like if I do grab my sharpie and just scrawl it down on the blank white square I, who don’t believe in jinxes, will somehow jinx it. If it is another event on my phone then maybe, like any other event, it could get canceled. I don’t want to count on getting another year older, because in the topsy-turvy world of illness that I live in, getting another year older is far from guaranteed. Because I don’t know if my birthday really will happen, I don’t put it down.

Life is not guaranteed. The next day might not happen for any of us. It’s not quite like the sunny commercials with the song “Tomorrow” from Annie playing. I love tomorrow.  It just that, unlike Annie, I don’t always feel “it’s only a day away.” Somehow my friends seem to traipse through their days, knowing that life could end quickly but seemingly only rarely feeling the gut punch of it. But even though I walk the same halls that they do, go to the same library and grocery store, and watch the same television commercials, that’s not my life. You see, I have chronic and largely invisible illnesses.

Most of what I have isn’t the sort of thing that kills you, at least not directly. I have POTS – postural orthostatic tachycardia syndrome. My body doesn’t automatically adjust for the change from lying down to sitting to standing. There’s good days and then there are floor days. Will it kill me? Not directly, not unless I happen to pass out somewhere dangerous.  I also have chronic pain conditions, and while fibromylagia and/or myofascial pain syndrome and neuralgia won’t kill you, they occasionally made me wish for it. Like many chronically ill patients, I’m still waiting and fighting for other diagnoses that might be years in coming — answers to questions about an undifferentiated autoimmune condition and random bouts of anaphylaxis. Both of those have the potential to kill me, either slowly or quickly. Even if we don’t have the diagnosis down yet on paper, it’s serious enough so that my doctors have already started treatment.

My doctors are not good about talking about the emotional impact of these conditions. Once or twice, immediately after I was diagnosed with one condition or another, I was handed sheaves of paper as I blundered out the door. Somewhere on the back of the generic printout would be a similarly generic, bland paragraph about support groups and depression.

No one told me that I would find myself staring at an unmarked day on the calendar and wondering what was wrong with me. Why couldn’t I just mark it off in the cheerful, sunshiny color I used for every other fun event, and move on?

Eventually, I did move on. I just put the pen down, walked off, and began the next thing. I proceeded to live my life, my new and strange life with chronic illness. It is not the Annie living that I do, where everything is only a day away. There’s usually plenty of everything in the current day, and I try to make it be good, too. I don’t use the YOLO philosophy anymore either, which often seems to be the excuse for doing things like having a pizza-eating contest or doing parkour on the third story of a building (I will neither confirm nor deny my past participation in such actions.) Instead I try to live knowing that even if I don’t know if I’ll be alive tomorrow, there’s no way I know right now that I won’t. I want to live life beautifully, honorably, uprightly. I want to live passionately and fully. I want to live so that my legacy is good, not bad.

I still can’t bring myself to mark the day on the calendar. Obviously, though, I know when it is. I recite the date every few days to someone in the medical profession, after all. I’m looking forward to spending the day with friends and family, whether that’s in person or virtually. I just want to live every day like it’s a celebration and appreciation of life, in some small way now.

Tomorrow is a blank day, full of the possibility for everything. Everything. Anything.

Traveling with POTS, VI

Travel buddies are the best.

When I was a teen, I couldn’t wait to take a few solo trips. In college and the first few years of graduate school, I did just that. There was something thrilling about setting off by oneself into the great world and successfully conquering one small bit of it. (Even though in my case it was usually more luck than skill that saw me through my (mis)adventures!).

To be honest, though, the joy of traveling by myself had started to wane just a little bit even before I got sick. Taking pictures was a way to share my experiences with others without having anyone physically present, but it was initially a sort of substitute for real human company. Then I feel in love with photography in earnest, and I also became much more ill. As I really began to struggle, a travel buddy was the ticket to successful travel… not my boarding pass, which I lost once. When you’re lost in brain fog, a travel buddy can help point you towards the right sex bathroom; when you’re too weak to lift a case, a travel buddy can help lug it over (or convince someone else to do the lugging for both of you!). A travel buddy can remind me about medications, shout at rude people, drive a rental car, and make sure no one accidentally puts something I’m allergic to in my water or meal while I’m in the loo. In return, I’m an endless source of bumbling amusement most especially, but I try to have their back as well. And the tab, whenever possible, I’ll admit.

The funny thing is, even with my changing perspective on solo travel, if POTS hadn’t slammed into me I might not have learned to not only tolerate, but to even enjoy someone else’s company on trips. Wrecking ball style, it shattered my illusions about the safety of solo hiking, and brought in instead an appreciation for fellow travelers and their journeys that I had never even considered. Even when I am well enough to go driving around a city and spend a day on the town by myself, I find myself checking over my shoulder not because of danger of being alone, but because more often than not I want to look back and share this experience with someone.

Travel buddies. Hard to find, but worth the investment.

 

 

Traveling with POTS, V

Two words. Checked bags.

Except for medications and whatnot, of course. Which, let’s face it, probably fill your carry-on and/or personal item anyway. Spring for a snazzy carry-on to make the fact that you’re carrying enough medications for an old folk’s home more palatable, and consign the heavy stuff to the tender loving care of the airline.

 

Traveling with POTS, IV

My luggage is also full of compression wear. I packed a lot, and I used almost all of it. I thought about not bringing much… but then I remembered that I probably wouldn’t want to spend time and energy on vacation hand washing hose every night. Thankfully even compression athletic leggings don’t take up much space or weight in luggage.

Even if I don’t need thigh-high squeezers at home, when I’m traveling the stress and additional demands of travel mean that I sometimes really have to just flail about putting the things on and lump it (literally, because on a bad flare day the pressure might bring about a rash). But it’s worth it. The difference in between watching a movie or counting the soggy popcorn kernels on the floor of the theater is a pair of boa-constrictor tight hose in a stylish (*not*) nude.

Chair with Wheels

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This trip marked a first for me. Amazingly enough, I’d never used a wheelchair except in hospitals and doctor’s offices. I knew I needed to try to use my body as much as possible. “Use it or lose it!”: that was my mantra. The truth is that I probably missed out on some evenings out or trips to places like museums or zoos, just because I was simply too tired and couldn’t stand that long.

But at the end of my last trip, I flared. A few days before I  was supposed to fly home, I lost my own private battle to stand rather abruptly, not even making it all the way through the simple hymn I was supposed to be singing. To complicate matters further, the day after I made it back home I’d be undergoing a procedure. I needed rest. I needed help. I needed to not stand for hours in check-in lines, security lines, and boarding lines. I needed a wheelchair.

Of course, I couldn’t just go and request one, pushing aside years of denial in one casual click of the mouse, o so easily. No. I researched involuntarily denied boarding online. I sought advice from that bastion of support, Facebook. People in a dedicated POTS group instantly responded. If it would help, go for it! That’s what it was there for. The wheelchair assistants were paid. No, I wasn’t taking it from someone else, and it wasn’t just cutting in line. If I thought I would have issues, a wheelchair was a perfectly logical, very practical thing to do. I stared at the screen. Then I decided I needed another opinion… so I tracked down my younger sister.

“It’s just a chair with wheels!” she snorted, rolling her eyes. “Just do it already!” Then, problem dismissed, she tossed her hair back and settled down to do some real work.

Hmm.

Ok.

After another hour of pointless agonizing, I finally went through the online check-in process and requested assistance going through the airport. My sister stood behind me, providing emotional support and no doubt inwardly rejoicing that she wasn’t going to be a withered, bent shell of a human due to carrying her stubborn sister through a terminal. All it took was a few clicks of the mouse on an easy website, and it was done.

There rest of the process was equally simple — and amazingly, almost everyone reacted like my sister had the first time I asked her about getting a wheelchair through the airport. We went to the front desk of the airline and checked our bags. (Ok, I sat off to one side while my sister waited in line. Have I mentioned she’s rather awesome?) The harried man behind the counter very kindly confirmed my reservation and directed us to some seats off to the side. A perky woman checked our boarding passes and brought a wheelchair over in a few short minutes (or rather a transport chair, lacking any way for me to control it). My sister and I spent another few minutes behind a baggage area before another young woman came and took us all the way through security and to our gate, cheerfully and very patiently. We waited at our gate and I chatted with other passengers, not a one of whom seemed to care one whit that I was seated in a wheelchair instead of a normal seat. It was a discount airline and we were all in for a tight and uncomfortable trip no matter what; there was a strong sense of fellow-feeling and brotherhood as we contemplated hours in vinyl jumpseats. There was a longer wait to actually get on the plane, but half-way through the boarding process someone else materialized and propelled me down the ramp.

I napped for most of the flight, curled into my vinyl square like a cat. There are some advantages to being vertically challenged. 🙂 After that rest, I felt like I didn’t really need the wheelchair for the trip off the plane. There isn’t nearly as much standing involved in the deplaning process, and it is extended periods of standing that tax my system. But in the end, I was glad that I simply got back in the seat. Another nice man took us at warp speed through hall after hall…after hall… after hall…. the terminals were strung together and endless. When we arrived at baggage claim, of course our baggage hadn’t — it’s a quirky constant of air travel. If you are on time, your bags are late. The wait for your bags is directly related to how few delays you experienced in flight. Got through TSA fast? Take a number and wait 20 minutes in line at the baggage clerk’s desk, sucker! But the longer you are delayed, the faster your bags beat you to your destination. It once took me 29 hours to fly from the Central Coast of California to Denver. My bags beat me by two days.

I had been worried that I would be judged, the young woman in the wheelchair. How could she need this? I impulsively told everyone what was wrong: “I have POTS. Postural Orthostatic Tachycardia. The part of your body that automatically controls things like heart rate and blood pressure? That’s broken on me.” I told people who didn’t even want to hear it. I was babbling and knew it and just couldn’t stop. It didn’t matter one way or the other, though, and finally I began to relax a tad. Gradually I got accustomed to watching people from my new position. I didn’t seem to be any more or less visible than I was normally, which is not very: people’s eyes frequently slide past me. If they did it now for a different reason instead of the normal lack of perception, I couldn’t tell. There were a lot of butts. It wasn’t always terribly comfortable having someone else push me, because with a transport chair there wasn’t any easy way for me to move myself if I was in the way. I had to crane my neck around to look at the person propelling me, and it felt so impolite to talk to someone without looking at them, but even more impolite to simply sit there without any sort of conversation. I got a sort of childish glee from the few things I could do, like pushing the elevator buttons. “I got it!” I’d squeal from the chair, face to face with the ranks of glowing circles. I hadn’t been that pleased with my ability to punch the button for the ground floor since I was four. Ah, well.

For a first experience, it was incredibly positive. I was treated with courtesy everywhere and kindness at almost every turn by the staff. My fellow travelers, amazingly, treated me like any other travel-weary, sweaty, and frustrated journeyer on the bumpy sky lanes. I have to thank Frontier Airlines and their excellent personnel for helping me. It was an emotional step to take, but now that’s it’s been done my worry over using a wheelchair seems nearly as childish as my excitement for pushing elevator buttons. I don’t know whether or not overcoming this reluctance will open up a whole new world of evening operas and museum day trips yet. But I do feel that big events seem far more doable than they have in the past… and I now know that my local zoo rents chairs with wheels. 🙂