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

Graduate students live in an awkward, liminal world, straddling the line between student and teacher. To our professors we are students. To undergraduates we are usually instructors.We’re both and neither at the same time. Graduate school is an expensive undertaking at a point in life when many others are getting jobs, buying houses, getting married, and raising families. Some of us juggle those aspects of life while still in school, others end up putting those things on hold while pursuing an education. Everyone teases you about what you’re going to do afterwards and when you’re finally going to get done and join “the real world.” A lot of us are aware that the funding and benefits we get are better than the adjuncts who are teaching us, and that is terrifying. It also explains why some of our instructors very nearly resent the graduate students they teach.

It’s even stranger as a graduate student with disabilities. I’m part of a very small demographic, and it’s not one that my professors are trained to deal with or for which my graduate program is designed. There’s a lot of things I wish that they knew, so in preparation for one day having a productive conversation, I’ll be presenting one of the list every couple of days.

1. I wish that they knew that I have to coordinate between three or four different offices to try to get accommodations as a graduate student. I must deal with the same office that handles the undergraduate students and usually isn’t set up to deal with the different demands placed on graduates. I sometimes have to deal with human resources if I have a campus job. I occasionally have to take problems with either my teachers or my bosses to the ombuds office. And finally, I may have to personally deal with my department to get accommodations.

For instance, no one at the student disability office would help me get a stool to sit on for teaching my sections. I have POTS. I can’t physically stand to teach for long, but I’m short and my students need to see me. I was told to ask my department for help. But that means negotiating with my department head, who doesn’t want to–and shouldn’t have to–know exactly what is wrong with me. My department isn’t trained to handle these requests, and I need the people in that department to be able to write recommendation letters. It’s TA work, not student employment in the traditional sense, so appealing to the overworked human resources department will not only waste money but probably will be unhelpful in the extreme. 

End of the tale: as a graduate student, I’m probably not going get a stool any time soon.

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Chocolate Cupcakes O’ Bliss

One of the things that I’ve missed since starting to struggle with food triggers is dessert. Sweet bliss, that sugary note that says that now, indeed, dinner is done.

So far, I’ve found sorbet, almond milk ice cream, Theo chocolate bars, raspberry chocolate bars from Trader Joe’s, and Enjoy Life chocolate. I can handle a bit of chocolate at a time, although not nearly as much as I’d like to eat (a common enough problem among all humans, or so I’ve been informed. 🙂 ) A wonderful local bakery makes a variety of allergen-free cupcakes, but a lot of them still use coconut products (a trigger for me, yipes!). And I LOVE cupcakes.

Enter brave friend with a kitchen and an adventurous spirit. I’ve tested out more food responses in her kitchen than I have almost anywhere else. It’s been amazing.

“1/3 cup oil!” I call. “On the shelves next to the stove,” she answered. I fished out a big container of vegetable oil and hesitated. “Vegetable oil” is one of the most deceptive phrases in cooking to me, rating right up there with “natural flavors.”

“Vegetable oil… let’s see, what vegetables you use… ah, soy.” We both paused. A few days ago I’d tried some hummus with soybean oil in it. Supposedly no one reacts to soybean oil. Those researchers had apparently never met me. As reactions go it was pretty tame – bit of a rash, a few mouth blisters – and Benadryl took care of it, no worries. But I wasn’t in a hurry to repeat the experience. Neither was she. She grinned. “There’s olive oil there too.”

We subbed out the canola for olive oil. Then because olive oil and honey go together in cooking to me, I suggested we use some of that. We chunked in about 1/3 of a cup of some local honey. She thought that we might need to disguise those flavors with something else, so she found a container of chocolate powder.

“Does this work?” I skimmed the label. “Yep!” I can handle a bit of chocolate powder.

We threw in a lot of chocolate powder. Then I got to lick the batter. Pure delight. It tasted sweet, it tasted like batter, it tasted like chocolate … at least stage one passed for dessert!

We made such massive cupcakes they overflowed the paper cups and had to be pried out of the tin with a knife. They were moist, delicious, and apparently a hit with more than just me. When I was leaving, her husband insisted that they keep one. 🙂

The base recipe was provided Jamie at milkallergymom.com: https://milkallergymom.com/dairy-free-egg-free-vanilla-cake/. For our chocolate variety, substitute olive oil for canola, add 1/3 cup of honey, and put in several tablespoons of chocolate powder.

Red-banded Hairstreak

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I had been thrilled to see butterflies on our walk, but I was ecstatic to see this tiny hairstreak. It has been a bad year for photographing hairstreaks. They’re not terribly common in some of the places I photograph regularly. The frequent grass trimming and lack of appropriate food keeps the numbers low. But there are usually at least a few flitting about, and this year I’ve seen a grand total of two. So when I saw the brilliant flash of blue and red, I squealed.

“What?!?!” my friend asked, no doubt thinking I’d seen a doubloon or at least something poisonous.

“It’s a hairstreak!!” I bubbled, while slithering through the middle of a flower garden on knees and elbows to get closer.

“Um, ok!” my friend responded, having picked up that a “hairstreak” was some type of butterfly. Pal and fellow photographer that she is, she gamely turned to keep an eye out for incoming wedding guests and anyone official who might not appreciate having a small woman with a large camera become embedded in the zinnias.

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Hairstreaks got their name from the thin tails on their back wings. These hairlike extensions resemble antenna to predators (see the white tips), and help trick anything wanting tiny butterfly for its meal into going for the wrong end.

 

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The most impressive and colorful part of this disguise is, to me, the eye spots and brilliant patch of iridescent blue scales on the hairstreak’s wings. When feeding or resting, the hairstreak rubs its back wings together, making the highly visible blue dots appear and keeping the antenna in motion. A little pearlescent showy display never hurt a butterfly trying to separate himself from the crowd and attract a mate either, and neither does the pheromones released by males from rubbing their wings together.

It was a great photo shoot. Well worth a few stares from passing bridesmaids. 🙂

Blooper Reel!

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He’s laughing, open-mouthed. I swear.

We’ve all had it. Those wonderful pictures, perfectly lined up, all glowing light and smooth lines, and then abruptly SPLAT the silhouetted bird lets loose with a nice juicy one. Sometimes it’s photographer error, like the day I gleefully shot lovely macro photos at a rate that would have done an Olympic bobsled photographer proud. And sometimes, you just get … unlucky.

So here they are, for your amusement – Titanium Butterflies Bloopers!

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Exit stage left

 

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We have liftoff!

 

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Too slow, Joe…

 

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INCOMING!!!

 

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Nikon 5000, this is Cabbage White touching down on pad 1…

Painted Ladies

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This year, painted lady butterflies migrated in such numbers that they showed up as a 70 mile cloud on radar over Colorado.

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We didn’t have the numbers that Denver reported, but the painted ladies were happy to pose for photographs. 🙂

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Painted ladies are migratory, but the patterns aren’t always consistent and the numbers certainly aren’t. In that respect, they’re a wee bit like me… as I consider booking holiday travel and hum “should I stay or should I go?” For me, there’s dozens of factors to consider: traveling with a few random medical conditions is a little tricky. Scary as that is, we probably know even less of the factors that influence butterflies’ migration. Wind? Weather patterns? Availability of food? Lack of predators this year… and if so, why is that? Sun or magnetic fields or some sort of chemical trail or what as a navigation device? Either way, they seem to be better with their navigation that I am sometimes. I got us lost on the way home.

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One Thing I Learned

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I was innocently reading a web page and abruptly ran into a challenge: What have you learned from being chronically ill? What has changed for the better? The challenge was given with the protestation that this wasn’t about being all Pollyanna about the miseries of being chronically ill, but when they looked back on their journeys, there had been positives.

I know there have been in positives in my life due to chronic pain and illness, and one of the changes I’m embarrassed to admit. Most who follow my blog might, by now, have picked up that I like nature. Maybe, perhaps, I’m a wee bit nuts about it! I enjoy taking pictures of colorful but still very buggy bugs routinely. I was raised to enjoy the outdoors and when my dad handed me a Nikon film camera when I was a tween and started to explain the magic of photography, I was hooked. But when I first moved over 2000 miles from my tiny coastal village to a large landlocked city, I had a pretty horrendous attidude about their version of the “outdoors.”

It was a city. It had parks. With smooth asphalt paths and a few carefully marked, well-traveled, wide “nature trails”—code for something that often had little educational signs periodically and maybe even pooper bag dispensers. The trails were all easy, and almost everyone on them believed that they were really experiencing nature or “hiking.” I did one park’s trails 3 times before lunch one day and then gave up, disgusted. I went through three different sporting goods stores before I found one that had hiking boots. The stores did have ATVs though, to make it easier to pack out after a successful hunting trip—or perhaps to pack in an adequate amount of beer for the trip. There was some good hiking several hours’ drive away, but I had been used to literally walking 10 minutes from my house and finding my way around a preserve on trails that no one had ever bothered to label. Even in my master’s program, everyone escaped into the mountains every chance they got and some also for some chances that probably weren’t really chances but just phosphenes from squinting too hard for a second. Didn’t matter. They were “outdoorsy” and proud of it, and that didn’t just mean ties with pictures of deer on them.

Now, I did think that it was cool that there were accessible trails and playsets and treehouses scattered about, but I’m ashamed to admit that I thought pretty much every trail in the city was accessible. I had a plenty of scorn and very little consideration for anyone who believed differently,

And then I went from having a condition that was supposed to be permanently fixed to having a condition that was less fixed to having multiple surgeries and diagnoses and needing help to make it to the bathroom. My world drew in on itself, and I was so sick I didn’t even notice the suffocating snugness of it until it was practically skin-tight. I couldn’t walk far at first, but eventually I began to stagger around one of those little looped asphalt paths. Those tiny jewel-like parks meant a lot more to me.

A lot of my butterfly photographs are taken at parks like those, a couple hundred acres of playing fields and playsets. Some of them have woods and natural areas—fields left to grow wild, ancient trees with the scars of past disasters still visible in their trunks. With a bit of care and a long-range lens, many of my photographs give the impression that I’m much farther in the wilderness that I actually am.

I learned that not all the trails I had thought were “accessible” were really accessible at all. I learned that there were many different ways to appreciate nature, and not all of them involved putting on a pack and hiking. My world had shrunk to me like a cotton shirt that had accidentally been washed on the hot cycle—now, with the help of friends and parks and ramps and door paddles and elevators, it began to slowly stretch out again. I appreciated the kindness of the people who graded the difficulty of the trails and made some short loops—bugger my old self, so proud at being able to do them all in a morning! My old self was an ass. The one place where there should be plenty of room for everyone—our parks—I was perhaps the most judgemental about sharing in any meaningful way with people less fortunate than I.  There was room at those parks both for people wanting to take a nature walk and for people like me to lap them. The only place that hadn’t had room was my mind.

I’m still learning. I hope not to stop learning any time soon, either. I hope I’m not so arrogant now as to think that I’ve mastered the art of empathizing with others, or that I’ve suddenly solved the problems of accessibility in public nature preserves. I also still find myself thinking that many people in the city need to redefine what they think of as “wilderness” and “hike” yet, too. I’m not quite so far from my old self as I’d like to be! But neither, thanks to chronic illness, am I the same smarmy, scornful girl of five years ago who mocked trails that were less than a mile and had handrails. For that, I am grateful.

Monarchs

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These are from the second week in October. I was so thrilled to find monarchs! Here they migrate south for the winter, and although they do have a flight in October it’s still pretty rare to get a good picture. The unusually warm weather for the first part of fall helped

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Monarchs live the longest of any butterfly in my area – up to 10 months.

 

 

 

“The Hunt for Red October Butterflies”

Or so my friend laughingly dubbed it. It was one of the most terrific weekend jaunts in recent memory.

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A few weeks ago we both, unbelievably, carved out some time from the hectic sprawl that was our lives. We decided to go to a park and take a walk… with our cameras! Squeal!!!! We gleefully charged up camera batteries, set up pickup times that we both were probably going to miss, and forgot various sundry and important things (or at least I did—my water bottle. If you have POTS and it’s a hot day, which it was, that’s just a bozo no-no, as my mom would have called it).

She’s an incredibly dear friend, knows my love of chasing butterflies with my camera, and as a fellow photographer is patient enough to wait for a minute… or twenty … while I slither around on the ground trying to adjust aperture and focal length and whatnot.

As a personal victory, I walked farther than I had in quite a long time, and we crossed this railway bridge!! First, I’m scared of heights. Truly, honestly scared. Second, there weren’t any railings or other things for me to grab. Third, it required stepping over the gaps onto each old tarry beam. Fourth, some of those beams were in pretty bad shape. Fifth, my sense of balance can be very bad, a side effect of POTS and having joint hypermobility. Basically, it means I’m a little bit closer to fainting than the average person at any given moment, and my joints wiggle just enough that my body has a hard time determining where it is in space. Thankfully, with the help of an insane number of drugs and a lot of work, it no longer feels like I’m walking across the deck of a ship in a storm. Instead it feels like I’m on a floating dock, or maybe a bowl of really stiff jello. It’s an improvement, but periodically the earth simply tries to shake me off. How does a POTSie cross the bridge, then? VERY slowly, with a friend holding on to her hand, bracing and providing a balance reference point, coaching her over the rough spots, showing her where (and in the case of the ones half eaten through, where not to!) step. I was laughing breathlessly from adrenaline and triumph every four steps.

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I did refuse to go back the same way.

And then, amazingly, right at the end of the walk, we found butterflies.

And it was one of the several recent gasps of hope amid the drowning flood that has been illness and school. It was pretty close to a real hike. There might be a reason to replace my hiking boots yet, and not just because they offer great support for wobbly ankles. Maybe I didn’t need to think that holding onto my hiking camera daypack was being selfish and fanciful of me, just yet. Maybe I’d eventually be able to walk for miles and miles again, like I had before.

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And all the maybes aside, I certainly had a simply fantastic day at a local park, chasing butterflies, tramping across bridges, counting the number of bridal parties all posing for shots around the gazebos and fountains, and talking with a friend. And that was joy itself.

Dysautonomia Week – Saturday

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I’ll be honest. I had thought about just blogging Monday-Friday, because that’s the school week. But Friday ended up being a depressing, horrible day. And then came Saturday, and there was hope.

8:00 am: I did reset the alarm. I needed it, because last night I kept waking up. I’ve learned to sleep through the whomp of helicopters and wail of sirens that comes from living near about 6 hospitals. Instead, I kept hearing weird snatches of music, the sound of an argument that abruptly got replaced by something else in a completely different tone … it took me a while to figure out that the next-door-neighbors were having a pretty low-key party (by 4 am, anyway), and were channel-surfing. Yep. Why I can sleep through fire engines but not a Broadway musical is the reason why I’m a musician and not a cop. Well, that and the non-functional state of my body and general lack of desire to be law enforcement, probably. 😉

11:45 am: I get a phone call from the compounding pharmacy that wakes me the rest of the way. Will I be coming in to get those meds? I tell them I will be today, although I don’t quite know how. Ghost-me has reached the stage where it’s only a few dust motes moving with a little more direction than can be completely random. It’s not a super-bright day, and when I’m not in a shadowy room or blinking at a computer screen, it’s all good.

Breakfast of POTSies

Breakfast of POTSies

12:15 pm: Deus ex machina. It’s a term from classical theater – classical meaning Greek and Roman. God from the machine. In opera, it is a plot device when, at the point when all seems lost, a god would descend in a great feat of stage machinery and set all to rights. For me, deus ex machina came in the form of a friend and her little 12 month old daughter, a text from the deacon of my local church, and another a little later from someone with space in their car who was going to church. The first text was the most unexpected and needed. A dear friend and her baby were going to Costco. Did I want to come along?

Costco, the big box store to end all big box stores, the perfect shopping destination if you’re looking at an uncertain length of time without the ability to drive. She’d even try to run me by the pharmacy first.

6:30 pm: The pharmacy, well, we missed it. But what did do was a huge shopping run through several stores, playing with her daughter the entire time. I hadn’t gotten to talk to people — really talk, face-to-face — for a while, and it was so very welcome. I wish I could be a better friend. I got to hold her kid, and for the first time in a long time I wasn’t really concerned if I could sit down immediately while holding her, because I didn’t feel like I was going to fall over right at that moment. Lights for both me and the little girl might have held a special fascination, but I walked all the way through Costco and Aldi! I was spent by the time we finished with Aldi, though. When I made it home, pulled off my sweatshirt, and had a chocolate square, my body revolted and broke out into a red rash/flush. A teeny bit of caffeine and some friction, that’s all it takes for a flare. Still. If I made it through COSTCO…!

12:30 am: I have a lousy one and a half papers left to grade, thanks to a blip in the online system. My editor wants an update on the last 10 pages of proofing I need to finish, and I still have a lecture to write for Monday morning. I have a bunch of tests to finish marking, and between us two TAs, we’ve found a few problems with the exam key/ exam itself.

I got up to get some water at one point and got really dizzy and sick. I didn’t gray out, but it was a little too close for comfort. Of course, I had been curled up under a heated pad, trying to ease the ache from shopping, playing, and coughing out my lungs for most of the week. Heat is not a POTSie’s friend. And I definitely didn’t drink enough. It makes me scared – perhaps I was running a bigger risk than I thought, when I jiggled my friend’s little girl? I didn’t think so, and nothing gave me any indication that I was in trouble. I also know that given a choice between either stopping this med and maybe needing a wheelchair to get through Costco, or not being able to drive for a few months at night but being able to cuddle a baby… well, I want to cuddle the baby.

I also have a ride to church on Sunday. Which would be today.