Words and Penguins.

On a productivity scale of poor, fair, good, and excellent, the past two mornings would fit squarely into the good category. I have managed to write another 1.5 pages. The chapter’s argument has come into better focus. I know exactly which spot I need to expand, and I know what “chunk” I need to write next. Also, I rediscovered this piece on the Thesis Whisper about how to turn out a large number of words/day and “not go bat shit crazy.” She argues that most writers (of all stripes) only have two hours/day of good, creative writing time. The rest of the day is best devoted to tasks such as edit-cleaning, reading and organizing. Based on my own experience with Big Book Project (and some other article projects as well), I am inclined to agree with her. I have genuinely tried to get in four solid hours of productive writing time very day, and no matter what I always fall short of that goal. On my best days I get three hours, and on my worst one. This piece reminded me to go a little easier on myself. I learned during Dissertation Project that the more I nagged myself for failing to meet the quotas I set for myself turned out to be quite counter-productive. The more I chastised myself, the less productive I actually became. Oh Catch-22, Catch-22…

There are two things I would like to become better at though. I’d like to do a better job of hard focusing. Some mornings I sit down and plow through my ten minute writing segments, with only short breaks at each half-hour mark to do things like brush my teeth and pack my bag for my trip to the archive. Other days I fail miserably at this, and take breaks between ten-minute segments to do idiotic things like check Facebook and send emails. This is bad, because I have noticed that I really do lose concentration threads are essential for working out the knotty problems in writing. Must improve. The other problem is that ever since April, I have a hard time buckling down first thing in the morning to writing work. To be fair, I was coping with some sad professional news: I had been a finalist (one of three) for a slick job at Famous Ivy League University in Major American Metropolis, but unfortunately did not get the job. It was a thrilling to make it that far in such a competitive search, and I got very positive feedback from the search committee. But the let down was HARD. Very bad for writerly motivation. It took me an hour on most mornings to collect my thoughts and gather the courage to sit down at the computer and return to Big Book Project. I’d like to get back to my regular routine of rising, breakfasting, and sitting down to work.

While I’ve been working on that, city life has improved. It is no longer nearly as hot. YES! And these hilarious, yet strange pink penguins and their polar bear companions have appeared all over central Moscow. They are part of an ice cream fest. What’s not to love?




Another Day, Another Page.

Technically, I should have posted this yesterday, at the end of my writing day. But that did not happen. “Life got in the way,” in the sense that I ran into my colleague from New Zealand in the library again. I mentioned to her that I was planning to meet a colleague from NYC, who is in Moscow for some summer research at a new craft beer pub. We decided that when it comes to craft beer sampling, the more the merrier, and so she and I prepared to leave the library together. I got in a solid one hour and fifty minutes of focused writing time between home and the library. I also managed to photograph the necessary pages from a primary source text, which I will soon be using as evidence in the next section of my chapter. Productive, but I have still not yet managed to meet the four hours of focused writing time/day that I have set as my goal. Studies have shown that four hours of focused creative work (writing, art making, music composition, etc. etc.) is the average maximum that an individual can achieve before the returns start to diminish. Of course this time varies from person to person; some can do more, some less. But I am keeping it as my goal, if only because it functions as one more measure that helps me stay on track in this age of distraction.

So, the craft beer was delightful. The food excellent. But it meant a late night. Once home I went straight to bed. No time for blogging. And this is disability related. As I think I have mentioned before in this space, fatigue is a major component of Ehlers-Danlos syndrome. So too are sleep issues. The combination can result in snowball effect. Sleep for me is a necessity. If I stay up late, then I have to sleep in if I can (Sometimes I have to be up early to teach or attend a meeting. And if I do, well, then that’s just that. I weather the unfortunate consequences and try to readjust my schedule to include more self-care and rest. I also keep a firm eye on my schedule and try to avoid mixing late nights with early mornings.) It is not just a matter of not functioning my best the next day; sleep deprivation can wipe me out for the next week or longer. So that is what happened today. In late, up late. But I managed half an hour of writing this morning. And I managed to crank out another page. Now I’m off to the archive. Will try to get another half hour in before bed. Not ideal, because I don’t usually write as well after dinner. But today perhaps, worth a try.

Oh and in case you are in Moscow and looking for craft beer, here is the spot we tried. Very good, but it is also worth exploring other outlets. The economic crisis (Ruble plunge) has made imported beer too expensive for many Russian consumers. In response, domestic producers have created a delicious and burgeoning craft beer market. There is more variety every month. Enjoy!

Beer Happens. Moscow.


The Best of Intentions.

I really did have the best of all writing intentions when I woke up this morning. Intentions and a Plan. I write best in the morning, so the Plan was to get up, have breakfast, and get right to work on Big Book Project. Oh and also try to solve that nagging little problem about a broken rec. letter link in a fellowship application portal. This meant I had to check my email (bad). And right there was an email from said recommender with broken link reminding me to please contact the fellowship administrators, because he was ready to upload his recommendation. One does not want to disappoint letter writers. So I set about trying to solve the link problem, which required the installation of a newer web browser, two emails to the system administrator, and careful tinkering with the application itself. Which led me to read the fine print. Which led to questions about my eligibility for the fellowship. Turns out, since I have not yet had my Ph.D. for two years (two-year Ph.D. anniversary is in September), I am ineligible for the fellowship this year. So. All that tinkering and emailing for nothing. Disappointment aside (It was an amazing opportunity.), the morning I had set aside for writing had also evaporated. Or almost evaporated. I wrote for a whole ten minutes. Woot?

Not really, because this point I need to be cranking out two pages/day. And ten minutes won’t get me there. So instead of going to the archive this afternoon as planned, the new Plan was to go to the Lenin Library and sit at my desk in the reading room for longer than ten minutes. And then, boom! I ran into a colleague from New Zealand, who has come to Moscow for some summer research. Instead to heading up to the reading room, we went to the “bufet” for some delightful instant coffee. And she showed me the proofs of her new book about Cold War-Era Soviet political posters. Now, those visuals are amazing. Also, we enjoyed the coffee. In this particular case, I have no regrets about not getting right down to work.

When I eventually did sit down at my desk, I did get work done. 1.5 hours of serious focus allowed me to crank out another page. Not two, but then one is better than none. And everyday the rest of the chapter seems to come slightly more into focus. So I’m grateful for that, because this next bit is tricky. Because it is tricky it makes me nervous. I’ll get back to it tomorrow, when the New Plan is the Old Plan: get up, get to work, go to the archive.

We’ll see. For now, a view of the Kremlin from the Lenin Library reading room. At least they spoil us with the scenery:

From the Reading Room-Lenin Library


After a Long Absence…

After three years, several major life events, and lots and lots (and lots) of travel, I have decided to return to this blog. I will still write about issues related to disability from time to time. Disability is, after all, central to my embodied experience of the world. I cannot ignore it. However, my reasons for returning are mostly practical. I need to finish a substantial project, which I will call Big Book Project, over the course of the next ten months. And by finish I mean complete and edit all four chapters of the manuscript, write the introduction and conclusion, re-write the book proposal in preparation for submission to publishers, and then wait and hope. Big Book Project is an academic book. It is central to the little career pathway I am trying to (somewhat unconventionally, it seems) carve out for myself.

Since my last post three years ago I completed and defended my doctoral dissertation (aka Big Writing Project). My Ph.D. was officially conferred. I held a postdoctoral fellowship in Budapest. And after my ten months there, I opted to return to Moscow, to work as a “research fellow” (lots of reading and writing, with a little teaching on top) at Developing International Research University. So here I am again back in my beloved city, learning how to turn my dissertation (untold academic secret: A dissertation is NOT a book. It is a very very long bureaucratic document with lots of citations of original sources with the potential to become a book and/or several peer-reviewed articles.) into a book that actual people, and not just a handful of folks with narrow, Ivory Tower vision, might want to read. This blog will be a chronicle of that process. There will be (ideally) one post  for every writing day. As it stands, I have an outline of the entire manuscript, a hodgepodge annotated bibliography, two rough chapter drafts, heaps and heaps of notes from the archive and from sources in museums and the early Soviet press, a draft of an introduction, and a (shitty) first draft of a book proposal. The task at hand is to revise and round out chapter one. I’ve been working on that for the past month fairly intensely, mostly in the kitchen of my apartment in central Moscow. From here, the work goes on:

Sunset from the balcony





Documenta (13) Dilemma.

After a really lovely vacation sailing around the coasts of Tuscany, Corsica, and Sardinia (thanks to the generosity of some extraordinary Russian friends; more on this adventure to follow in subsequent posts.) I find myself back in Moscow, facing a professional dilemma.  To go to one of the world’s most important exhibitions of contemporary art, Documenta 13, or to stay here in the Motherland with my newspapers and books and archives?  The dilemma at hand is a dilemma largely because of disability issues.

Here’s what I know about Documenta: I’ve been once before (The event is held every five years in the post-industrial city of Kassel, Germany.) There is an awful lot to see. Some of it is interesting. Some of it is not. You may get a few good ideas out of the experience, which you can then relate back to your own work.  If you do, then the trip is worth it. For sure. And just based on the amount of stuff being acted out and on display, chances are pretty good that you will come away with something.  So that’s one check mark in favor of going.  But taking in all the art that is on offer at Documenta’s various venus can be a staggering task, even for the able-bodied among us.  Events are held that several different venues around the city.  There is a lot of walking and maneuvering, and more than a few rides on public transportation. There may or may not be a convenient places to stop and rest for thirty minutes at a time along the way.  This could be a problem. A really big problem.

I do love the Evil Aid. And I use it all the time.  And honestly, honestly I confess to actually and foolishly and certainly secretly believing that the addition of the Evil Aid to my life would somehow magically solve all my EDS-related problems. I was pretty sure of the following:

A: I’d be able to remain standing on my feet for a long as I wanted every single day.

B: With the use of the Aid, all my pain and stability issues would dissipate instantly, like vapor.

C: All questions relating to the possible occasional need for more help could be laid to rest, at least for now.

Um, reality check? Let’s start with B.  It is true that the employment of the Aid has decreased my pain and discomfort by a staggering 85%.  It has also helped rehabilitate the muscles that my old limping, improper gate had allowed to atrophy.  This means that even when I’m not using it, for example at home or over short distances, my posture has improved, as has my general stability.  Also, since the seemingly simple act of walking is no longer seriously over-exerting my muscles and joints, my EDS fatigue has decreased somewhat.  My overall ability to function has improved, as has my productivity at work. Or to put it another way: Aided-mobility—–>empowerment.  Win win win win win. BUT. It has not effectuated a miracle.  I must say this out loud, because the general feeling of improved strength and stability can fool me into thinking it has, to the point where I allow myself to stand or walk unaided for way too long and then suffer the less than pleasant consequences, which I have discovered, can last for days.  So there is that. But also…there are still a few troublesome scenarios, for which I have found the Evil Aid only provides minimal relief.  One such scenario is the Museum Scenario.

I am a philosopher of the visual.  It is part of my job to go to museums and to look at objects from visual culture.  Museum/exhibit/gallery going requires not only a lot of walking/moving.  It also requires a lot of standing.  And it is the standing that is the killer.  I cannot stand for long periods of time. The ‘cannot’ aspect of that sentence is definitive.  If I am required to move and stand, move and stand, move and stand, then I must sit and sit frequently.  If I do not then the pain and weakness become so intolerable that I have to go home and lie flat.  And trust me, once you’ve left a museum or show for the tenth time, because of this you really start to think “Wow. This totally sucks. There has got to be a better way.”  To be sure the Evil Aid helps. If I had to estimate, I’d say that on a good day it buys me another tolerable hour on my feet. On a bad day, it buys about twenty minutes.  Supportive shoes also help, as does an ankle brace if my tendonitis is flaring up. But Supportive shoes and an occasional brace, like the Evil Aid, are helpful ingredients, they are NOT a definitive solution.  The standing in place problem is a tricky one to solve, especially when faced with an exhibition space that offers its viewers no place to sit and rest for a bit.  This, by the way, is specially a problem in Russian museums; for whatever reason there seems to be a dearth of benches or other similar surfaces in Russian viewing galleries.  I’m not sure why this is the case.  Perhaps it has something to do with the firmly held (Don’t try to challenge it with any form of logic or science, you will just get a lecture. Or several lectures.) belief that sitting on a hard, cold surface will freeze one’s reproductive organs and make one sterile for life. Or in a best case scenario cause a stomachache or a cold. (No. I’m not kidding. I wish I were, because being scolded for this is funny the first couple of times it happens, but after that, it just becomes old. And increasingly annoying.) But alas, I digress.

In my experience, there are few places to sit and rest while viewing at Documenta. In fact, there are not all that many places to simply sit and rest at all.  So if I do go, even with the Evil Aid in tow, I will likely only be able to tolerate the looking and moving for short periods of time.  I will definitely have to carefully prioritize what I want to see, which takes a lot of the fun and creativity out of the experience.  And I may not be able to see everything I want, unless of course…I can find another solution…

If I were home in the States, I’d phone the physio I trust and see what he recommends.  Although, I’m pretty sure I already know when he would say, because he has said it before to me indirectly and to my mother (who also had EDS) directly, “You know, there is nothing wrong with relying on wheels for extreme situations (e.g. all day standing)…” If that were the case, I’d go from there, and find a way to get on with it.  But here I am, stuck in the Motherland, where my mobility aid options are limited to the Evil Aid. Honestly, if rollators were more fashionable and less clunky I’d just try to rent or buy a crap one just to use solely Documenta, as I think the rollator would be the perfect solution (good stability AND a place to sit).  But unless I can pick up a rollator near the exhibition, this solution will quickly lose its already limited viability, as rollators are notoriously difficult to transport, especially when one does not have access to a car and is already employing one mobility aid. The other option, which would seem (emphasis on the seem) more feasible, would be to rent or borrow a set of manual wheels at the exhibition. But the Documenta (13) website is very disappointing in that it offers very little information on accessibility, so I have no idea as to whether or not this is even possible.  There is only one small brief mention on the accessibility of venues for wheelchair users and other aided mobilizers, and this appears in the PDF version of a map of the exhibition, and one has to really dig around the website and know a little German to find even that.

Alternative ideas anyone? All thoughts are welcome and will be considered.


The jetlag finally wore off. The three colds I picked up one after the other finally went away. I was all set to sit down and post about my most amusing and absurd encounters and experiences here in the Motherland.  And then. The mild Moscow summer weather turned ugly. And my body turned into one of these:

What the Esteemed Medical Professionals won’t always tell you (usually because they are ignorant, poor sods) is that if you have EDS, any type of EDS, your body, and particularly your joints, become very sensitive to changes in temperature, barometric pressure, and humidity. Yup. That’s right. Just like your my grandmother’s eighty year old cousin Lenora, who can accurately predict an incoming rainstorm by the severity of the ache in her knees, you too will be able to tell when big changes in the atmosphere are afoot.  On Tuesday, my back and hip became uncommonly achy.  The sure-footedness I felt I’d acquired the pervious week evaporated. And my joints, particularly my shoulders and knees started to pop loudly, and in very public places.  (Why bother with the whole crutch falling to the floor routine, when you can interrupt an entire library reading room simply by moving your arm to load the microfilm machine?) And then? The rains came. For the past two nights we here in Moscow have experienced severe daytime humidity followed by spectacular thunderstorms and/or violent downpours. Followed by some magnificent sunsets:

And as for me? I will be enjoying whatever cataclysmic spectacle the weather has in store from my humble little bed. My back has pretty much capitulated to the forces it cannot control and is demanding the adoption of a supine position pronto. Since there is no Wi-FI in this place those stories about traveling to the provinces and schlepping Soviet newspapers around a stuffy library with one hand will have to wait. Until the weather improves the joints. Until then, just call me Cousin Lenora…


Well. Right now, frustration seems to be THE word.  I’d like to file a compliant. I warn. A somewhat whiney complaint. Against Ehlers-Danlos Syndrome.  Thank you EDS, for making mobility that is already precarious just that much more difficult…

Here’s the thing: I have on again/off again tendonitis in my left ankle.  This is partially due to the fact that both my ankle joints are extremely hypermobile due to the wonders of EDS.  But it is also partially because of the damaged nerves in my lower spinal cord.  Due to this damage, the gluteus medius muscle and tibialis posterior tendon, the tendon that runs inside the ankle, are weak and dysfunctional.  Both areas have a tendency to ache and become inflamed when they work too hard, but my ankle is particularly picky.  It will not tolerate just any shoe or just any pavement. Oh no no no no.  It demands just the RIGHT shoe: no heel, roomy toe box, and most importantly a solid arch support.  It would also like an orthotic insert, but I after a so-so experience with several pairs of those as an adolescent I stubbornly swore them off forever.  It is probably high time to re-introduce them, but I’m gonna have to work up to that.  You see I fear, perhaps irrationally–I hear there was been a lot of progress in insert technology–that they will limit my footwear options even further, and trust me that pool is already very very small.  Anyway. The second my left ankle senses that the arch support in a particular shoe is starting to show even the slightest sign of wear it immediately launches an extreme protest, becoming inflamed, painful, and swollen.   It it a common enough occurrence around here and I do have, or at least thought I had, a fairly good strategy for managing it. Switch to shoes with better arch supports even if that means, resources permitting, going out and buying a new pair.  Rest and elevation. NSAIDS.  Normally this protocol works pretty well.  It may not alleviate all the pain right away, but it does usually reduce it from an “Oh my god don’t you dare put any weight on me!” roar to a niggling “Hey. I’m tendonitis, and I’m still here.” wimper.  This time, however, I will be the first to admit, I failed to comply with step one of the protocol.  I did not switch shoes immediately.  I did not switch shoes at all.  And here is why: Russian spring.

It is April here in Moscow.  The layers of snow and ice that have accumulated over the course of the Motherland’s long winter are finally beginning to melt.  This can only mean one thing: MUD.  Lots and lots of mud. And it is not just any mud.  Thanks to the thousands of motorists that clog Moscow’s streets and the lack of emissions controls in Russia in general, the mud here is mixed with a healthy amount of automotive excrement and copious amounts of motor oil.  Which of course, to the joy of aided mobilizers, only serves to make walking surfaces that much slicker.  This particular combination of muck, oil, and moisture also has the tendency to ruin footwear, even, or rather, especially, high quality, just-out-of-the-box footwear.  In the United States, finding a pair of shoes or boots that I can actually walk in and wear long term can take an entire day at best and several days at worst.  The search often involves trips to several stores and almost always comes with a price tag that eats a sizable chunk out of my monthly budget.  And this is under optimal shoe shopping circumstances.  In Moscow, all shopping is far from optimal, as the goods available tend to fall into two categories: cheap and not built to last longer than two months at best or luxury goods.  As an American, when I think of “luxury goods” I think of brands like Louis Vuitton and Cartier, but in Moscow, any item that is not made in China or the former Soviet Union is subjected to such extreme mark-ups that even a brand as middle market as the Gap can become a luxury item.  So what is the average Russian consumer to do?  The majority of Russians buy the goods for everyday living from the cheap and not built to last category.  However, when it comes to buying an item that needs to be used for a long period of time, such a winter boots or summer shoes, it is not uncommon to see someone forking over their entire monthly salary to pay for a high or middle quality brand that here and only here–anything for example with the word “Levi’s” stitched onto it–falls into the “luxury goods” category.

I however, was not keen on doing this.  You see, I knew in advance what a nightmare shoe buying in the Russian Federation can be for someone whose footwear options are already limited. I devoted much of my limited baggage space to shoes, toting not only an excellent pair of winter boots, but also TWO pairs of high quality spring/summer shoes, all with good arch support. I had also left last year’s winter/early spring boots here with a friend of mine.  They were a touch worn-in, but because I didn’t want to subject my high quality, carefully selected footwear to the perils of the Moscow spring muck, I decided to bring them out only in a muck emergency and only for one or two weeks at a time.  Well the muck emergency arrived about a week ago, and as planned, I started wearing last year’s boots.  And that’s when my ankle started pitching its hissy fit.  “Arch supports with a few months of wear? You thought you’d get away with that? Ha ha ha ha. Oh no you don’t.”  The pain increased, but I stubbornly persisted.  I was not about to switch to a pair of perfectly good shoes only to see them ruined, and I had no money to squander on a new pair of boots only to see them spoiled by May.  So. I just kept walking. Over Moscow notorious uneven surfaces. I tried to ignore the pain. I tried to rest and elevate my ankle.  I tried the NSAIDS.  I told myself that since I had my crutch, my ankle wasn’t working as hard as it might be, and so SURELY that should help.  In an act of ultimate defiance, I took a trip this weekend to the provincial city of Tver’, where disability access remains unheard of and the general lack of infrastructure is striking, even by Russian standards.  And for this, I stubbornly and stupidly refused to change my shoes.  Instead, I spent much of the day standing and walking on uneven surfaces, telling myself that my ankle would get to rest on the three hour train trip home.  My ankle, however, had other ideas. On the trip back it started to throb and swell magnificently. And by the next morning the pain was so intense and the swelling so bad that it couldn’t bear any weight, even with the aid of my trusty crutch.  So instead of spending Monday in the library or archive as planned, I stayed home in my little flat with my foot propped up, popping NSAIDS like candy, and tried to focus on writing with very little luck.  Fortunately, ever so fortunately, this extreme measure has yielded positive results: I can walk with my crutch enough now that I can get myself to the library and the archive.  However, the shoe problem remains, and I think I now have no other choice but to capitulate.  Since the weather is still too cold for my summer shoes and too warm for winter boots, I’m going to have to go out and buy a pair of overpriced decent shoes that will ultimately be sacrificed to the Moscow muck.  And I hate this. I hate that I have to go out and spend good money, money I could use for a research trip, on overpriced footwear.  I hate that my ankle won’t tolerate something cheap that can be worn out quickly and thrown away without regret in a month.  I hate that I’m going to have to spend two days of work time tracking down a single pair of wearable shoes.  I hate that, because Russian women are generally expected to wear high heels whenever possible, the hunt for something flat will be that much more difficult.  I really do try not to let the negative aspects of EDS interfere with my life. But right now, it has me pretty frustrated. And I hate that too.