The Academic in Pain, or, Why I Want to Have Surgery

Tomorrow afternoon I’m going to be meeting with my surgeon to discuss the results of my MRA, and next steps. If said next step doesn’t involve surgery, I’ll be shocked… and not in a good way.

Nobody likes being cut up, but—in my world, anyway—it’s far preferable to managing symptoms. As any academic living with chronic pain will tell you, managing one’s work and one’s body takes a serious toll. I’d rather spend a few weeks out of the academic game now than working for years with a divided brain.

I’m not being literary when I use the term “divided brain.” When one lives with chronic pain, their brain is always partially occupied by processing that pain. Neurologists can explain the science of pain better than I can, but I’m intimately familiar with its results: fogginess, forgetfulness, and fatigue. It’s one of the world’s crappier alliterative triple threats.

My grandmother always used to say "If I had a brain I'd be dangerous." I concur.

My grandmother always used to say “If I had a brain I’d be dangerous.” I concur.

I lived with chronic pain through all four years of college. During my freshman year I was recovering from major surgery. Sophomore year was spent managing pain in an attempt to hold off yet another surgery. The first half of my junior year was spent walking with crutches, and the latter half on medical leave, recovering from the surgery I’d been trying to avoid. Senior year—circle of life style—was spent recovering from major surgery.

Did I do well at Bryn Mawr? Yes, I did exceedingly well. Could I have done better? Yes. Maybe not much better, but better. I also could have been happier. I missed out on everything from dance parties to studying abroad to trips into Philadelphia with friends, because pain made those experiences more upsetting than enjoyable. To quote one of my favorite 1950’s PSAs, “Perhaps a diagram will help!”

Now that I am again struggling with chronic pain, I’m finding myself operating much the same way I did in college:

  • I planned to get a good eight hours of sleep last night, but my body overruled me and I got twelve hours instead. And yes, I still laid down for an hour during the day. I’ll be in bed within the next hour, meaning that I’ll have spent more than half of the past day asleep.
  • My desk is littered with sticky notes to help keep me from forgetting all the things I’m supposed to be doing, and everything in my iPhone calendar has an alert attached to it. Everything.
  • I schedule my academic work around my pain medication,
  • Simple things like shopping and laundry require strategic planning to maximize efficiency and minimize the number of times I have to climb the forty stairs to my apartment.
  • Spending time with me means you’re coming to my apartment. I love all of the people in my life, but—as I put it to one friend—these days I’ll only leave the apartment for money, food, and medicine.

I’m pretty good at managing with a divided brain, but it’s not ideal. As we all know, college is one thing… graduate school and beyond is another thing entirely.

I’ve been lucky up to this point in my life, because I’ve always known that at some point I wouldn’t be working with a divided brain anymore. That’s a luxury that many people do not have, and one for which I have always been very grateful. It’s a huge part of the reason I decided to spend my life studying patient advocacy.

That’s why tomorrow afternoon, I’m going to have my fingers crossed for an aggressive, invasive, painful procedure. The sooner I can get back to thinking with my “whole” brain, the sooner I can get back to the business of making the academy a more accessible place for all of us.

And Another Thing Too…

You know how sometimes you forget to write somebody an email, because you’d already responded to it in your own head? I did something not unlike that yesterday, in my post re: Tenured Radical’s piece on disability. It just now dawned on me that two of the most basic and important points I had to make in that post never actually manifested themselves, because they are so central to who I am, what I study, and my life experience, that I felt like I’d written them. I didn’t.

For those of you who can’t read my mind… here it goes.

As I hope my last post on this subject made clear, I think it’s very important that students be proactive and responsible. I’ve always told my students—regardless of their ability status—that if you don’t advocate for yourself, then it’s unlikely anybody else will either. I’m all about empowering undergraduates to get the accommodations they need, and to kick ass and take names when the occasion calls for it.

It’s important, though, to remember that ability isn’t a static thing. I, for example, had been living with a disability for a grand total of five months when I showed up on the Bryn Mawr campus. I was totally healthy, until one day a doctor told me I wasn’t. Educators cannot and should not assume that every student reporting a disability on a college campus has a condition that is (a) under control, and (b) a longstanding part of their life. This is true of most kinds of disabilities, but is especially important re: mental health issues.

NB: regardless of your current ability status, *you* need to be thinking about these issues. Barring sudden death, we will all experience impairment of one kind or another over the course of our lives. It’s all well and good to empower students with disabilities, but they aren’t the only ones who need this knowledge. Until our education system gives disability studies the space it deserves, this means we need disability service centers on college campuses to be well-staffed, generously funded, and integrated into campus culture.

And another thing too…

My first year of college—fun though it was—was also incredibly taxing. I still needed a LOT of pain medicine just to get around, and the majority of my weekends were spent flat on my back, recovering from my myriad attempts to have a “normal” college experience (which, nerd that I was, basically meant going to class). I wasn’t trying to figure out what services I was entitled to… I was trying to figure out how to be okay.

Could I have been a better advocate for myself? Honestly, no. I was too busy learning how to live with a disability. Which is why having a really great Disability Services Coordinator was so important. I could go to her with my inchoate concerns and she’d translate them into something concrete and actionable.

So yes, empower students with disabilities to fight for themselves, but keep in mind that being an ally sometimes means stepping in so that the student in question can focus on being a student for a while.

And another thing too…

Did I mention that I served as Editor in Chief for Trans-Scripts most recent volume: “Constructing (Dis)Ability?”

I totally did that. If you’d like to see some wonderful academic writing on ability from faculty and grad students alike, check it out.

“The Six Million Dollar Scholar” is the personal blog of Andrea Milne, a Ph.D. candidate in modern U.S. History at the University of California, Irvine. To get the story behind the blog’s name, click here.

My (Very) Hastily Written Response to Tenured Radical

Claire Potter of Tenured Radical wrote a very nice piece today (yesterday on the East Coast) entitled “Do Attendance Policies Discriminate Against Disability?” in response to some well-earned criticism she’d received on a previous post. I wanted to respond to this most recent article at length for two reasons: (1) because, as my last post made clear, these are issues around which I have a good deal of experience, and (2) because I think it’s really important to point out that asking questions is a really good thing. When Potter ended her post by asking her readers what she was missing, I did a mental happy dance. Before you read the rest of this post, I want to urge you to read the piece that inspired it. Also, read the comments. This is one of those rare times that doing so is really worthwhile.

Okay… now that you’re done, I want to throw a few thoughts into the mix. First though, a few disclaimers:

  • I wrote this post unusually quickly.
  • This post includes things I want “able-bodied” faculty and admins to know, but it’s also got advice for folks with disabilities in it too. I don’t think it’s especially confusing, but it’ worth keeping in mind.
  • This post is not all encompassing, and I imagine I’ll be writing on this subject for a long time
  • My ability status has fluctuated quite a lot, so while I feel like I know how to make my way in the world while living with a disability, I don’t feel comfortable identifying as “disabled.” I think of myself more as “temporarily able-bodied,” except when I’m not… like right freakin’ now, for example. (See my last post for the details)
  • I want to be VERY clear that everybody’s experience is different, and that I can really only speak with authority about MY *mobility* issues. I do not speak on behalf of people with disabilities.

Now, in responding to this piece, I’m writing from a fairly unique position. In the past ten years (including right now) there have been four different times that I’ve required accommodations as a result of physical impairment, first at the (private) high school I attended, second at Bryn Mawr (a small liberal arts college, or SLAC), and twice now as a graduate student at UC Irvine.

Potter points out that oftentimes SLACs, cuddly though they are in many ways, are also fairly inhospitable climates for people with disabilities. While this can certainly be true, it is not always the case. Bryn Mawr did a really good job taking care of me. I was the hall advisor on “the accessible hall,” so I lived alongside several other people with mobility impairments. (Yes, we were all kind of lumped together, but it was nice to have a next door neighbor who “got it,” and there were plenty of folks on the hall who didn’t have mobility issues. The only people who thought of it as “the accessible hall” were the folks who… needed an accessible hall.) If my memory serves me correctly, we all did pretty well. Of course, it sucked that some of the historic buildings were inaccessible, but the campus culture was extremely sensitive to accessibility issues. I can honestly say that I never heard anybody—students included—complain about an event being moved, or a class being held in a different building. It’s hard for resentment like that to exist in a community where you know practically everybody. I also never heard “I’m sorry, we just can’t do that” at Bryn Mawr, but I have heard it at UCI… so there you go.

Another good tip Potter offered was that people with disabilities should, if at all possible, tour college campuses to get a sense of the accessibility situation. That is great advice, but the most important thing to do is have a conversation—in person or on the phone—with the person you’re going to be interacting with in Disability Services. If the institution you’re planning to attend focuses on meeting legal requirements and little else, it’s not going to be a good place for you. In the same way that you’re supposed to shop for a doctor, you need to shop for an on-campus advocate. I was lucky enough to have a wonderful Disability Services Coordinator at Bryn Mawr, and she made my life significantly easier.

Side note: this is another double-edged sword for SLACs; in my case, the one person charged with making sure I and every other student with a disability got accommodations was a total rock star. Had she not been a rock star, those four years could have sucked. There are plenty of tradeoffs at big schools too: you’re less likely to have a personal relationship with your coordinator, and there’s a lot more in the way of paperwork and red tape to deal with. The campuses are also bigger. So pick your poison. I definitely prefer the former. I was also lucky enough to receive boatloads of financial aid to attend both high school and college, so… coming from a place of privilege.

Speaking of red tape, it can be really hard to know what you’re going to need to get through college, and how exactly to go about getting it. Because college is a new life experience, it necessarily brings up new issues for which one is unprepared. The most important accommodation I had in the course of my undergraduate career wasn’t about where my classes were or attendance policies, or even being excused from classes during inclement weather. No… turned out I really needed a new mattress every year. Can’t say I’d seen that coming when I was getting myself ready to go to college. What your students need may surprise you, but keep in mind that it may also surprise them.

Less surprising: I don’t know if this is true everywhere, and the situation could be unique to students I’ve taught, but I’ve been led to believe that visiting students with disabilities don’t always get the same kind of institutional support from disability services that the rest of the student community receives. So if you’re planning to study abroad—in the US or elsewhere—make sure you know what the institution you’re visiting will (and won’t) do to accommodate you, and what forms of documentation they need from you to do so.

I would talk about the perils of relying on documentation to determine ability status, but that’s already been done beautifully by Emma Whetsell in the comments section of the original article. Props to you, Emma.

Also, if you’re a course instructor, PLEASE mention disability services on the first day of class. Students absolutely should be proactive about getting the accommodations they need, but your mentioning it doesn’t just encourage them, it helps normalize and validate human difference in a way that is vitally important. A lot of instructors work hard to reduce the stigma around mental health services on campus; we need to do the same for disability services.

I’m going to close this meandering blog post by (1) saying another big thank you to Claire Potter for responding to this issue in such a respectful way, and (2) by reminding everybody out there in the humanities and social sciences that ability is a really really important and underutilized lens of analysis. We need to accommodate students, but we also need to integrate Disability Studies into our syllabi. If what we teach is a reflection of our values, the academy still has quite a lot of work ahead of it on this particular score.

“The Six Million Dollar Scholar” is the personal blog of Andrea Milne, a Ph.D. candidate in modern U.S. History at the University of California, Irvine. To get the story behind the blog’s name, click here.

Bringing Hauntology Home

I wrote a blog post almost a month ago in which I broke down the various life hacks that have helped me go from exerphobic to exerphilic (those probably aren’t words, but humor me). Near the end of that post, though, I revealed that I was currently sedentary, for reasons beyond my control:

[My fitness hacks] worked for a while. I even logged a hundred miles on my new bike! But then I started feeling some pain. I took a week off and it went away, so I got back to working out. Maybe I got too excited—I always feel good while I’m working out—or maybe I should have taken more days off. Point is, the pain returned… and it hasn’t gone away.

… I haven’t worked out at all in almost two weeks, and it still hurts to walk. I’d actually built up some visible muscle over the past month or so, but it’s now melting away before my eyes. And I can’t really do anything about it.

Travel plans being what they are, it’s going to be a while before I get to a doctor. The worst case scenario isn’t really that bad, all things considered, just inconvenient. Minimize your physical activity, they’ll tell me. Rest. Take pain medicine.

The whole thing kind of pisses me off. I guess the one thing you really can’t hack is your own body.

Well, a month has passed, and things have changed, but not for the better. Yesterday morning I finally accepted reality and broke out one of my old crutches. Despite a month and a half sans-exercise, my condition is worsening, and my mobility is increasingly compromised. I can walk unassisted, but it’s not a pleasant experience. Needless to say, I wasn’t expecting this turn of events.

I remain optimistic that I’ll be running around causing trouble in the very near future, but the fact remains that I have a series of hurdles ahead of me in the coming weeks. Some of these hurdles are physical, some logistical, and some professional, but the biggest hurdles—and the ones over which I have the most control—are emotional. I get depressed when I feel limited. The pain is uncomfortable, yes, but its true power (at least in my case) comes from its ability to activate bad memories.

I’m hoping to have a diagnosis and treatment plan in place within a week or two, and even before that process begins I’m truly convinced that the worst of my mobility and health issues are in my past. So I’m not mustering the courage to go on another medical odyssey, not really. No, I’m a seasoned traveler. I’m steeling myself for a confrontation with my past. I’m coming face to face with ghosts. I’m being haunted not just by my own medical history, but by those of so many people I love who’s physical challenges I’ve been witness to, many of whom have passed away.

I won’t be posting medical updates on this blog, but—given my interest in increasing accessibility in both the academy and the world beyond—I suspect there will be many posts in the coming weeks inspired by the issues I’m currently facing.So, get excited for that, I guess?

There’s good reason for me to be optimistic in spite of the pain I’m currently in. I’m an historian of patient advocacy because of the time I spent as a patient. As hard as those years were—and they were very hard—I don’t regret them. Whether the journey I’m in for this time around is long or short, easy or hard, I know that I’ll be the better for it, as long as I stay positive, and continue living an intentional life.

“The Six Million Dollar Scholar” is the personal blog of Andrea Milne, a Ph.D. candidate in modern U.S. History at the University of California, Irvine. To get the story behind the blog’s name, click here.

 

Exercise: How Dealing With My Body is Transforming My Mind

I’ve spent most of my life allergic to exercise, on account of it being boring, painful, and a waste of my time. Then I had two major, life-changing surgeries—more on those in another post, I’m sure—and suddenly realized that exercise actually doesn’t deserve it’s own circle of hell. At least half of the misery I’d felt all that time was the result of not having fully functional legs. Woops.

One of the few pictures I can get of my little brother dancing that's copyright free... because I took it in our backyard in 2010.

One of the few pictures I can get of my little brother dancing that’s copyright free… because I took it in our backyard in 2010.

My “laziness” has always been a source of some embarrassment, in no small part because my younger brother made a career of dancing. Even now, when he’s not dancing, he’s skinny, flexible, and ripped. He has a lot of the same physical issues that landed me in a hospital, but somehow they landed him center stage.

Now, my brother is exceptionally talented, and I know I shouldn’t compare myself to him—for being very close, we’re also remarkably different. Nevertheless, watching him win trophies at tae kwon do tournaments, perform in New York City with dance schools that I’ve actually heard of, hell, watching him correctly dribble a basketball, has always left me thinking “we come from the same genetic pool… I should be able to do this.

Since about 2010, I’ve been flirting with exercise, in the hopes of releasing my inner Jane Fonda. There have been times I worked out damned near every day for months, and then years of inactivity. There are three major problems that have kept me from being as physically fit as I’d like to be: (1) boredom, (2) lack of time, and (3) my physical limitations, which—much to my chagrin—still exist despite the aforementioned surgeries. I’ve solved two of these problems, and figured if I share my solutions, maybe good karma will help me with the third.

  1. Boredom. I don’t really get to have a lot of variety in my work out routine. Doctors have told me I should really stick to the lowest of low impact activities: swimming, biking, and “running” on the elliptical. Being a creature of habit, I don’t mind this… I like my workout to look exactly the same every day. (Yes, I know that’s not what you’re supposed to do, and frankly, I don’t care.) The problem is that none of these activities is exceptionally exciting. What I’m finding works best for me is to listen to audiobooks while I work out. The problem is, it’s easy to tune out most audiobooks when you’re working out. Even if, like me, your natural inclination is toward books that most people find snooze-worthy, you need to pick books that are exciting, and then force yourself to only listen when you are engaged in the physical acivity of your choice. My best workout companion thus far has been the wildly popular The Fault in Our Stars by John Green. It’s the first YA book I’ve ever “read,” but I suspect this particular genre may be the key to keeping me fit.
  2. Lack of time. Far and away my favorite physical activity is walking. It’s nice and slow. And therefore takes a lot of time. Time I don’t have. I really like going to the gym and using the elliptical too, but—even though the gym is super close to my house—going ends up being a two-ish hour commitment. And all that bouncing around tends to give me a headache. I know I need to prioritize my health, so a few months ago I finally bit the bullet and bought myself an exercise bike. It’s a fold up/roll away bike, but out of sight is very much out of mind for me, so the stupid thing is crammed in my bedroom. As much as I hate looking at it, and as embarrassed as I am to have spent money I honestly don’t have on gym equipment when I have a super uber deluxe gym within walking distance, it really does save me a ton of time. A ton. And—added bonus—I’ve never once run into one of my undergrads while riding it.

Then there’s that third issue: my own anatomy. I thought I had that part figured out: as long as I always did slightly less than I felt capable of, I reasoned, my body should be able to handle the stress. Progress would be slower than it is for most people, but I’d eventually attain my fitness goals.

Well, that worked for a while. I even logged a hundred miles on my new bike! But then I started feeling some pain. I took a week off and it went away, so I got back to working out. Maybe I got too excited—I always feel good while I’m working out—or maybe I should have taken more days off. Point is, the pain returned… and it hasn’t gone away.

Celebrating my mother’s birthday at the Bradenton Riverwalk… which, thanks to me, ended up being more of a “riversit.”

I’m in Florida right now visiting my mother and the aforementioned buff little brother. I haven’t worked out at all in almost two weeks,

and it still hurts to walk. I’d actually built up some visible muscle over the past month or so, but it’s now melting away before my eyes. And I can’t really do anything about it.

Travel plans being what they are, it’s going to be a while before I get to a doctor. The worst case scenario isn’t really that bad, all things considered, just inconvenient. Minimize your physical activity, they’ll tell me. Rest. Take pain medicine.

The whole thing kind of pisses me off. I guess the one thing you really can’t hack is your own body.

But enough whining. I’m trying on relentless positivity for a change, and I’ve liked the results. The good news in all of this is I do know I am capable of exercising. Not only am I capable of exercising, I’m capable of enjoying the process.

How does she make this look FUN? Click on those ridiculous legs of hers for a link to the site I lifted the picture from.

How does she make this look FUN? Click on those ridiculous legs of hers for a link to the site I lifted the picture from.

I’m never going to be Jane Fonda, but I can be healthy. It will prove a bigger challenge for me than for the average person, and occasionally—like right now—I’m going to be put in a time out by forces beyond my control. But I like a challenge, right? It’s the reason I chose to study history over the subject (literature) that came to me more easily. It’s the reason I decided to go to graduate school. I don’t particularly like the person I am when I’m not rising to one occasion or another. So it’s all good. Instead of kicking ass on my stupid little bicycle, I’m writing. I’m exercising another (arguably more useful) muscle. Intention is half the battle. And right now, I’m plotting my triumphant return to daily exercise. It’s not burning calories or building muscle, but it does make me feel better.

 

“The Six Million Dollar Scholar” is the personal blog of Andrea Milne, a Ph.D. candidate in modern U.S. History at the University of California, Irvine. To get the story behind the blog’s name, click here.