What I Talk About When I Talk About Pain, or an Extremely Personal Post about Disability

The thing about disability is that it affects everything in your life. I spent years trying to pretend I didn’t have a physical disability, that it didn’t affect me or the things that I do in any way, fighting against the idea that my body would not be able to carry out the things that I wanted to do.

I first realized that this would be a problem in February 2016. I was on a course trip to Berlin with a fantastic group of professors and students, studying Holocaust memory by encountering sites first-hand. When the week was nearly out, I pulled my Achilles tendon badly and had trouble walking. I was in a terrific amount of pain, but I tried to walk on it for about a day anyway. Because I was on this trip and had committed to attending meetings and discussions, because I wanted to be at those discussions, and because I had trouble understanding that being in pain might mean I had to limit myself in any way.

I’ve been in pain for so long that I can’t remember a time when I didn’t ache. I remember dosing myself on Children’s Motrin when I was in middle school, trying to numb the aches that I assumed were par for the course for a competitive figure skater. In that world something was always tweaked or sore; it was normal to have some pain. I never thought that what I was experiencing might be worse than it was for others, and frankly I still don’t know whether it was. I wouldn’t get a diagnosis for nearly another decade.

The pain began to get worse during my mid-teenage years, but I never let it stop me. I developed chronic tendonitis in both ankles the summer I was 15, and even though the rink trainer told me it was an overuse injury, it never occurred to me to stop practicing. Instead I wore gel sleeves around both ankles, designed to keep the tendons warm, and took more OTP pain relievers. I still have those gel sleeves – I used them for my Achilles when it was injured last year.1

I have more injuries from those years than I can count. I once broke my ankle at school while running down a flight of stairs to a class I was late for; I assumed it was twisted and walked and skated on it for a few days before my mother noticed my limping and insisted I get it checked out. I had to wear an aircast for over a month and would miss the biggest competition of my season; it turned out that it wouldn’t matter, because the competition was scheduled for September 16, 2001 in Manhattan. It was cancelled. I tried to conceal my injury as much as possible – I guess in order not to admit weakness or seem different in any way. I worked on walking as normally as possible, concealing my limp and refusing to use crutches or a cane. I had more broken foot bones, broken ribs, shin splints, toepicks-imbedded-in-knees during those years then I could tally. We all liberally applied Tiger Balm as a cure-all, all had permanent purple rings around our ankles where our boots ended.2

By my senior year in high school I was reconsidering the whole figure skating thing. In those days, if you weren’t on the senior competitive circuit by 16 you weren’t going to have a career in the sport. I had spent years pouring all of my energy into a chimera and didn’t know what I should do next. Quitting seemed natural, although it took me over a year for that to actually stick. A year after that I noticed a weakness in my left knee – it couldn’t always hold my weight, and there was a sort of burning pain under my kneecap that wouldn’t go away. I would hit my knee with a hardcover book until it became numb, so used to mitigating pain that I didn’t think of the consequences of ignoring it.

When I finally dealt with the fact that the pain was becoming permanent, I began seeing doctors. It took another two years, but they thought they knew what was wrong with me. Arthroscopic surgery ended up proving the doctors’ theory wrong, and we went back to the drawing board.

Of course, the other parts of my life didn’t stop during all of this. I began college. I dropped out. I traveled a little and worked a lot. I went back to school. I graduated. I hurt my back terribly that last semester and still don’t know how; I wrote my thesis propped up on pillows and dulled by Vicodin. I didn’t consider any of this abnormal – it was simply how my life has always worked.

Years went by, the pain came and went. I separated my physical body from my daily life as much as possible, as bizarre as that sounds. I went to graduate school, was fortunate enough to have a few years without intense pain spikes, as well as flexible work schedules that allowed me to work around any incidents. I took it for granted that others would be understanding about my disability,3 that they wouldn’t see my physical incapability as symptomatic of a lack of desire or inability to work, that others would see me the way I saw myself – a brain separated from a body.4

This fall a new chronic disability emerged, one both separate from and connected to my decades long struggle with osteoarthritis. The diagnosis is still being workshopped, but it looks as though I have degenerative disc disease, or some other serious disc problem. My neurospine specialist, one of a team of people who work on trying to mitigate my symptoms, was surprised the first time he saw my MRI. “You’re awfully young for this,” he commented. You’re telling me, doc.5

Yesterday afternoon I received a second round of nerve blocks injected into my spine. Each time I do this I have to sign a release saying, among other things, that I won’t “make any major life decisions within 24 hours of the procedure,” which… seems odd to me, but OK. All of this seems self-pitying, whiny, beneath dignity somehow. I know I’m very lucky in many ways – lucky to have a body that appears to conform to norms, lucky to have health insurance that covers anything at all,6 lucky to be years away from back surgery, lucky that none of this is worse.

I feel this urge to get in my car and drive as far as I can, wake up in a new place, as a new person, with a new body. But that’s not how this works. Back in Berlin in February 2016, I sobbed for nearly an hour when I realized I couldn’t just tough through that Achilles injury – large, body-wracking sobs that I couldn’t stop. I didn’t want to have this body that seems as fragile as glass, that kept me from things it seemed everyone else could do. I didn’t want to worry that taking long walks, or standing for too long, or sitting for too long, or crossing my legs, or sleeping without a pillow under my knees, or trying rock climbing that one time, or taking a demanding yoga class might mean I would not be able to walk the next day, that I would be limited in ways that seemed unfair, unjust. But it is what it is; this is the body I have.

I meant to write about what it is like to have permanent, incurable, degenerative disabilities, what it is like to live with chronic pain. Instead this feels more like a confessional of all the ways I’ve hid and denied my disability, all of the ways I’ve felt sorry for myself for even having to deal with it at all. Today my pain is distinctly uncomfortable, soreness from the injections running down my low back and legs adding to the constant knee, ankle, hip, shoulder, neck, and mid-back pain. It’s not excruciating, though – the last year or so has taught me a lot about what level of pain I can be in and still function normally, and what unbearable pain is.7 In a few days I’ll wake up and the nerve blockers will have kicked in and the soreness from the injections will have faded, and the pain will seem manageable again, at a level that lets me hide it from view. I’ll go back to pretending to be a person with a whole, undamaged body, hiding my limp as much as possible and always telling everyone I am “fine,”  in the way that only a stubborn jerk with decent healthcare and an invisible disability can. I’m trying to be better, to admit my weaknesses and be open about my pain, instead of wearing flowy tops so no one will see the icepacks tucked into my waistband, trying not to clutch my lower back and insisting that I am fine, perfectly OK in fact, instead of having difficult conversations. I’m trying, but it’s hard.

NOTES

Berlin, Berlin

I began trying to write about my experience with HIS/GER 433: The Holocaust and Representation and our study trip in Berlin over spring break since… well, since we were in Berlin in late February and early March. But I’ve been stymied, partially because the Spring 2016 semester has been a test of endurance and limits in every way possible, and partially because I needed time to sort out my thoughts.

I worked with this class every week (sometimes every day) from January until May (with prep work beginning the semester before), serving as a sort of combination embedded archivist and co-instructor. As part of that work, I helped shape the syllabus, attended the seminar classes every week, participated in and led discussions, and helped plan and shape the final projects. I also was part of an intensive class study trip in Berlin over spring break.

HIS/GER 433 was experimental in nearly every way a class can be – the course comprised twelve students from a variety of majors (Caroline Bell ’17, Colin Bye ’17, Vita Dadoo Lomeli ’18, Kate Donahoo ’17, Rosi Goetz ’16, Hannah Grace Heartfield ’16, Matthew Schlerf ’16, Amanda Scott ’17, Bolton Smith ’16, Emily Taylor ’16, Nora Wartan ’16, and Ben Williams ’16) one lead faculty member (Scott Denham), two co-instructors (Roman Utkin and myself), and six faculty fellows from a variety of disciplines (Patricio Boyer, Caroline Fache, Kyra Kietrys, Kristi Multhaup, Alan Michael Parker, and Rizwan Zamir). Scott insisted on all participants being on a first-name basis with each other (no titles), and emphasized a democratic classroom model where students’ voices were allowed to drive both discussions and content. All 21 of us spent a week in Berlin together, visiting Holocaust sites and meeting with key figures in Germany to discuss remembrance and representation of genocide. No grades were given for individual assignments, and students and instructors dedicated many hours outside of the seminar meeting each week (particularly in Berlin and during the final project work, which I’ll describe more further on).

Course instructors get selfie-crazy in the Dorotheenstadt cemetery - posing with Brecht's and Hegel's graves.
Course instructors get selfie-crazy in the Dorotheenstadt cemetery – posing with Hegel’s and Brecht’s graves.

My role in the class was also pretty revolutionary – most of our archives & special collections classes are based around our existing collections, either teaching students how to use primary sources, helping them find and engage those sources for a project, or digitization and digital exhibit projects. But HIS/GER 433 utilized my base of knowledge (on the Holocaust, collective memory, and memorialization) and my “archival frame of mind” – I would often discuss archival theory in class and how it related to the historical research and readings students were conducting, and being an archivist helped ensure that the class final projects would end up in a repository (Davidson College’s archives, as a matter of fact). I was also pleased to see how interested in the students were in archivist/librarian careers – one student had already applied to library school (and was accepted during the semester!), and three others talked to me about career paths related to information work. Being able to “model” what an archivist is and does for undergraduate students in this way was really a privilege.

I feel like I’m still absorbing and processing everything that happened in Berlin and afterwards – I arrived in Berlin on February 24th, for two days of vacation before the students, other instructors, and faculty fellows joined me. Those first two days were incredibly relaxing – I made a point of not visiting any sites I knew the whole group would go to later in the week, so most of my free time was spent eating delicious food and wandering around Prenzlauerberg (with some jaunts to visit the Bauhaus Archiv, Currywurst Museum, and Templehof airport).

The interior of Templehof Airport - very cool!
The interior of Templehof Airport – very cool!

Once the students and fellow instructors arrived, the schedule was non-stop. The class experience in Berlin was so many things at once: exhausting (physically and emotionally), freezing, depressing, interesting, engaging, and incredibly educational. I feel like I know my students and my colleagues in a whole new way – I had so many fantastic group and one-on-one conversations about what we were seeing and feeling, and every person on the trip seemed to be genuinely moved and engaged in the subject and in our dissection of it. The people – students, faculty, staff, community – have always been the best part of working at Davidson College, and I already respected and admired the dedication and passion of our students and our employees, but that week together in Berlin awed me more than I would have thought possible. This community is special, and not just because of the academic rigor Davidson is known for. It’s a community that has allowed me to grow in a myriad of ways – as an archivist, as an instructor, and (as cheesy as it sounds) as a person.

All 21 of us, in the Bundestag after meeting with Ekin
All 21 of us, in the Bundestag after meeting with Ekin Deligöz.

The bonds we formed in Berlin carried over to the second half of the semester, particularly as we began discussing the final project outputs. We had several – an essay written for Gegen Vergessen – Für Demokratie e.V, a reading of Hank Greenspan’s play REMNANTS for the 2nd Annual National Jewish Theater Foundation – Holocaust Theater International Initiative Remembrance Readings, a presentation about the course and study trip by two students (Caroline Bell and Ben Williams), and the production of an archival book documenting the class. The archival book is particularly innovative – part scrapbook, part chapbook, part art object, the book includes extracts from writings students had done throughout the semester, reflections from students and instructors on the course and the study trip, hand-drawn charts, photo collages, and a fiber art cover that gestures towards Magdalena Abakanowicz and Joseph Beuys. The play reading, class presentation, and showing of the book all occurred during a public event on May 2nd.

The cover (designed by Rosi Goetz and Amanda), and Vita Lomeli Dadoo's page - including a pocket containing an essay she wrote on the gendering of Kristallnacht and her bio photos.
The cover (designed by Rosi Goetz and Amanda Scott), and Vita Dadoo Lomeli’s page – including a pocket containing an essay she wrote on the gendering of Kristallnacht and her bio photos.
Two of the spreads from the book
Two of the spreads from the archival book – the top pages cover the group’s visits to Sachsenhausen and Treptower Park (including a reflection by yours truly), and the bottom pages depict our visits to the House of the Wannsee Conference and the Bundestag/Reichstag.

Seven of these students graduated this past weekend, so I’m feeling extra verklempt as I write this – I’m so, so proud of the students from HIS/GER 433, not only for the high quality of the work that they produced by the end of the semester, but for their thoughtfulness and creativity throughout the class. I’m proud to have been a part of this group of people, teaching and learning from each other.

Outside of our wonderful students and faculty mentioned above, several other deserve thanks for making this course into the amazing experience it was: Gabe Ford for lending us his experience and bookmaking tools, the Weinstein and BACCA Funds for helping fund the study trip, the National Jewish Theater Foundation and Hank Greenspan for allowing us to stage the reading of his play, and the Davidson College administration for supporting this innovative model of course instruction and faculty/staff development. Big thanks also to my coworkers, for helping cover the archives reference desk while I spent so much time with the course.

I’ve been ruminating a lot on work-life balance recently – it’s a topic that comes up time and again across the many communities I identify as being a part of: archivists, librarians, digital humanists, academics. How much beyond 40-ish hours per week should I be giving my job? How do I “count” work done outside of the library building/not at my desk, as that’s sometimes invisible to others? My position is a staff position, which can sometimes be at odds with the collaborations and interactions I have with faculty on campus, whose working hours are different than most of our staff. I struggle with what’s best for the Davidson community, for my physical and mental health… but the answer has been boiling down to: for our students, our faculty, our community – I want to give all of my time. I want to be better, because this community deserves my best. I feel like I’ve drank the institutional Kool-Aid, but working for the archives of Davidson College has allowed me to learn so much, and I want to give back what I can to this community.

All that being said, I still have some more amazing images from the Berlin trip! So, capping off this post with pictures (some taken by me, some by other members of the group):

Bauhaus Archiv! I made a quick visit before our trip really got underway.
Bauhaus Archiv! I made a quick visit before our trip really got underway.
While I was at the Bauhaus Archiv, the rest of the group was making their way to Berlin - here, Rizwan, Rosi, Colin, and
While I was at the Bauhaus Archiv, the rest of the group was making their way to Berlin – here, Rizwan, Rosi, Colin, and Caroline B. all read on the floor of an airport.
Best graffiti at our local U Bahn - roughly translates to "cats against petty bourgeoisie"
Best graffiti at our local U Bahn – roughly translates to “cats against petty bourgeoisie” (although “Spießer” is one of those words that’s hard to translate, it seems).
Neue Synagoge, on Oranienburger Straße.
Neue Synagoge, on Oranienburger Straße – we stopped here on our first full day in Berlin, and Patricio gave a mini-lecture on the Moorish architectural style and La Convivencia.
Chatting with Caroline F. and Patricio on the tram - whenever members of the group got too cold, Scott lent his jacket out to them. Much appreciated!
Chatting with Caroline F. and Patricio on our way around Berlin – whenever members of the group got too cold, Scott lent his jacket out to them. Much appreciated!
You can't go to Berlin and NOT visit the Berlin Wall Memorial - we had interesting conversations throughout the trip about how the divided nature of Berlin and Germany as a whole affected memorialization of the Holocaust.
You can’t go to Berlin and NOT visit the Berlin Wall Memorial – we had interesting conversations throughout the trip about how the divided nature of Berlin and Germany as a whole affected public memorialization of the Holocaust.
The group packed into a mirrored elevator in the Bundestag, on our way to the Green Party's conference rooms. When this image was shared on our class whatsapp group text, Caroline B. captioned it "Dr. Zamir caught smiling."
The group packed into a mirrored elevator in the Bundestag, on our way to the Green Party’s conference rooms. When this image was shared on our class whatsapp group text, Caroline B. captioned it “Dr. Zamir caught smiling.”
One of my favorite pictures I took on the trip: Nora, Emily, and Kate in front of the Reichstag dome.
One of my favorite pictures I took on the trip: Nora, Emily, and Kate in front of the Reichstag dome.
Hannah Grace and Kyra in the Reichstag dome, German flag in the background.
Hannah Grace and Kyra in the Reichstag dome, with the German flag in the background.
Emily takes in the scale of Treptower Park - a really massive Soviet War Memorial.
Emily takes in the scale of Treptower Park – a really massive Soviet War Memorial.
The entrance to the memorial at Treptower Park.
The entrance to the memorial at Treptower Park.
We visited the amazing Staatsbibliothek zu Berlin Haus Unter den Linden reading room, with this beautiful sculpture of gigantic newspapers. After our tour of the building, Michaela Schiebe gave us a lecture on Nazi looted books (picture by Alan Michael Parker).
We visited the amazing Staatsbibliothek zu Berlin Haus Unter den Linden reading room, with this beautiful sculpture of gigantic newspapers. After our tour of the building, Michaela Scheibe gave us a lecture on Nazi looted books and we briefly chatted about German library schools and cataloging systems.
The group wanders through the Humboldt-Universität zu Berlin on our way to look at the Neue Wache.
The group wanders through the Humboldt-Universität zu Berlin on our way to look at the Neue Wache.
Ben, Matthew, and Patricio somberly examine a memorial to Jewish businesses in the fashion/clothing industry, outside of the Hausvogteiplatz U Bahn.
Ben, Matthew, and Patricio somberly examine a memorial to Jewish businesses in the fashion/clothing industry, outside of the Hausvogteiplatz U Bahn.
The group listens intently to Roman lecturing.
The group listens intently to Roman lecturing.
Prior to the trip, we'd had a class discussion on the Jewish Museum and it's complex and fascinating design. We talked about whether or not to walk on Menashe Kadishman installation of metal faces, whether walking or witnessing makes one more or less complicit.
Prior to the trip, we’d had a class discussion on the Jewish Museum and it’s complex and fascinating design (truly, you need to visit in person to really experience the intricate design and its physicality). We talked about whether or not to walk on Menashe Kadishman’s installation of metal faces, whether walking or witnessing makes one more or less complicit. Here, a few of our group walk on the sculpture.
Bolton takes a picture of the video playing in the Memorial to Homosexuals persecuted under Nazism.
Bolton takes a picture of the video playing in the Memorial to Homosexuals persecuted under Nazism.
Scuplture outside of the Deutsches Historisches Museum - "Einheit" means unity.
Sculpture outside of the Deutsches Historisches Museum – “Einheit” means unity.
Another new experience - my first döner, from Rosenthaler Grill und Schlemmerbuffet.
Another new experience – my first döner, from Rosenthaler Grill und Schlemmerbuffet.

Archives Month 2015

[This post originally ran on Around the D: The Davidson College Archives and Special Collections Blog.]

Every October is American Archives Month and North Carolina Archives Month, and here at the Davidson College Archives & Special Collections we’ve been celebrating the occasion in some way or another for the past seven years. However, for Archives Month 2015 we decided to really commit to Archives Month and experiment with some new methods of outreach and new collaborations. We’re a small shop (3 FTE), so I figured sharing our planning process and evaluating our activities at this halfway point between October 2015 and October 2016 might be useful for other archivists considering participating in Archives Month next year.

The 2015 North Carolina Archives Month theme was “Celebrating Archives: North Carolina Arts, Crafts, and Music Traditions,” so our first step was to sit down and consider what materials we have related to arts, crafts, and music in North Carolina. That led to planning one of our earliest events in the month, Mandolin Madness on October 5th.

Flyer advertising Mandolin Madness.
Flyer advertising Mandolin Madness.

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Day of DH 2016

Earlier this month, I participated in my third Day of DH, an international project designed to have digital humanists share what they do for a day.

I felt like I had even less time this year to live blog/tweet my day, and to read about others’ activities – April is definitely the cruellest month in academia, and as you’ll see in my Day of DH 2016 site, this was a particularly full day for me. You can read my Day of DH 2016 blog here (and see more about my Day of DH’s in 2014 and 2015), or peruse the #DayofDH2016 Twitter feed here.

Collaborative, Speculative, Possible Technologically-Enhanced Mobile Libraries

… Or How Davidson Students Learned to Stop Worrying and Love the Library.

[This post is a companion piece to the poster I presented at the 2015 DHSI Colloquium and DH2015 , designed to further elucidate the ideas in the poster and provide additional context.]

To view the .pdf of this poster, click here.
Click on the image for the full-size version of my DHSI colloquium & DH 2015 poster, or click here to view the .pdf.
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Day of DH 2015

Earlier this week, I participated in my second Day of DH, an international project designed to have digital humanists share what they do for a day (in answer to the perennial “What exactly is digital humanities, anyway?”).

Although the constant blogging and tweeting can be time-consuming, I really enjoyed the opportunity to hear more about other DH-ers’ work and share my own. You can read my Day of DH 2015 blog here (and see more about my Day of DH in 2014 here), or peruse the #DayofDH2015 Twitter feed here.

Eating (and everything else!) in Austin for ER&L 2015 Attendees

In just one week I’m heading to my first Electronic Resources and Libraries meeting – I won one of the DLF/CLIR + ER&L Cross-Polinator Awards for this year! I’m really excited to go to a conference that’s a bit different than my standard, meet new people, and learn some new things. I’m also really excited for FOOD in Austin – I lived in ATX way back in 2010 and have family and friends in the area, so I’ve visited a bunch, too. Here are my recommendations for eating and other Austin activities for first-timers:

Tacos or DIE, taken at Torchy's in 2010.
Tacos or DIE, taken at Torchy’s in 2010.
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2014: A Picture A Month

2014 was a pretty jam-packed year for me, work and non-work-wise, but I’m still pretty excited that it’s 2015 – I’m looking forward to another year filled with working long hours on projects I’m passionate about, traveling, writing things, trying new foods, etc etc. Here’s a picture from each month in 2014, as a sort of summary of how much work and fun can be packed into a single year:

January 2014: My first North Carolina snow!
January 2014: My first North Carolina snow!
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Year One

Last week marked my one year anniversary of moving to North Carolina and taking up my position as the Associate Archivist of Davidson College. I’ve written a bit in here before about all of the Big Life Changes that have occurred over the past year and half or so (completing two graduate degrees, moving 900 miles, etc.), but anniversaries always seem like particularly apropos times to reflect, so, here’s a few of the things I’ve done over the past year (get ready for a long-ish post!):

INITIATIVES

Probably the most enjoyable part of my job is that I get to work on a vast array of different projects and initiatives – there’s always something happening in the small (three FTE) Archives & Special Collections working group. We’re a constant hub of energy and ideas, and much of that is down to the amazing people I work with – the College Archivist & Records Management Coordinator (Jan) and the Special Collections Outreach Librarian (Sharon) have a combined 55 years of Davidson work experience, so their institutional memories and knowledge are invaluable. But even more important (to me, at least!) is their total willingness to try new things, play around with ideas, and listen to the new person in the room. Though I work most closely with Jan and Sharon, my larger department at the library (Discovery Systems) is similarly inventive and friendly, and I’ve met and begun collaborating with lots of amazing people around campus and around the state. I love working in such a supportive unit, AND they frequently bring in snacks to share – I’m living the dream, you guys.

When I came into work last Wednesday, Jan and Sharon had placed this incredibly heartwarming whiteboard in front of my office:

AWW
AWW!
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Supervising Student Workers: Summer Blog Roundup

My duties in the Davidson College Archives & Special Collections include supervising student workers, and this summer we had a bevy of them – five total! I’ve been in supervisory roles before – I was in charge of an office as an undergrad, and I had an intern work under me for a summer when I served as the archivist of the Nichols House Museum. However, this summer was my first experience with student workers in an academic library/ archives setting, and my first time supervising so many at once.

All in all, I think the summer ended up being incredibly productive, and our student workers were all amazing! I learned a lot by working with them this summer – it was challenging (in a good way) for me to train a new corps of students, and although I tried to balance out work I knew would most likely be tedious (scanning for hours) with some more exciting or creative projects, I’m aware that some of the tasks might not have been enjoyable. However, these five women handled every assignment with good grace, and I enjoyed getting to know all of them (as did the rest of the archives staff!). All of our students did some digitization work (primarily scanning, uploading, and entering metadata for student publications), although each had a variety of projects and assignments.

Here’s a roundup of the blogs the students wrote to summarize their experiences:

Monica Nelson (class of 2015) –  My Role as a Student Assistant for the Davidson Archives: A Glimpse into Past Projects

Meredith Pintler (class of 2016) – Behind the Scenes: E.H. Little Library in the Summer

Ellyson Glance (class of 2016) – A Summer of Scripts ‘N Pranks

Emma Kenney (class of 2015) – My Final Week as a Student Assistant

Vera Shulman (class of 2015) – A Summer of Scanning, Editing, Uploading, and Researching