Progress, However Slow.

When I restarted this blog, I thought it would be easy to keep it up. I do have a major project underway, for which I am accountable every single day. How hard could it be to add a few hundred words here at the end of the day? It turns out that this has proven difficult. I have been writing every single weekday. I am still not meeting my two page/day goal, but I’m fitting in, on average, two hours/day of solid focused writing time, and Big Book Project is growing. I am slowly working my way through chunks of chapters that I was previously intimidated by or uncertain about. The difficult emotional memories that accompanied the last few months of dissertation work, and which I continued to associate with manuscript revisions a year later, are finally beginning to fade. I am finding my own “authorial” voice. All this is good. But, it turns out that it sucks up a lot more energy than I ever would have imagined. And if anything else in life comes up on top of that, absolutely anything at all, then the blog post is the first thing to go. In the past two weeks, I took a trip outside Moscow to a friend’s summer cottage, or “dacha.” It was nothing short of wonderful. Cool. Relaxing. With lovely bike ride around the forest. However, I also managed to come down with a nasty stomach bug almost as soon as I returned home. Bouncing back from that was a challenge, as I (foolishly) continued to work on my book rather than taking a couple of days off to recover. That and then some fun personal life events have kept me off this space. But now that I’m recovered, hopefully I can get back on the blogging bus. Because I do work slowly, it does help to have this space as a reminder that progress IS progress.

And now, an illustration from the window of the suburban train that I took to the dacha:



I Blame the Heat.

This week the average high in Moscow has been about 30 Celsius. That is hot, folks. Hot. The heat is made worse by the thousands of cars that clog the streets. I never visited Moscow during the Soviet period, but I have heard from friends here that there were almost no cars. Even the average Soviet Lada could be difficult to come by for an ordinary family. Most people relied on public transportation, which I want to point out is generally excellent (and cheap) all over Russia, even in the smallest most “provincial” cities.  I am told in fact that my beloved Moscow looked something like this in the 1980s:


Those open lanes next to the Kursk Train Station are now almost always clogged. And that giant half-empty parking lot is now home to a kitschy post-Soviet shopping mall. But no matter. The city is has been boiling. And I am pleased to say that while I have worked on Big Book Project every single morning for the past three days, cranking out another 1.25 pages, I have not had any energy left over in the evenings to write blog posts. Afternoons are spent in the archive, and the process of getting there, working there (no AC), stopping off at the grocery store on the way home, and then getting back to my flat in the sweltering humidity leaves me totally drained. The only I’ve been good for are Skype calls with family and Netflix. (Netflix is in Russia now. But the selection of things to view is very odd and frankly, not great.)  Hopefully things will cool off, I’ll regain some energy, and will be able to say more about both the writing process and life in Russia, which in general, is always interesting and usually pretty great (despite the heatwave.)

Q: Where Did the Week Go? A: Conference.

Despite the dearth of new posts, I did manage to work on Big Writing Project exactly two days this week. And heck, I wrote another page! What happened to the other days? They got devoted to the writing of a conference paper, the delivery of a conference paper, and the recovery from the delivery of said conference paper. Some months ago I was invited by my boss to present a paper on a SubTopic in the field, which my work also happens to address. I was pretty excited and honored, because my boss happens to be an expert on said SubTopic. And it also happened that the material from the paper coincided almost exactly with the material I am working on in my current chapter. Preparing the paper forced me to revisit a big chunk of Dissertation Project (aka Big Writing Project), something I had been very reluctant to do. But now I am glad that I did. It felt good to take apart what now feels like a very rough cut of a more mature project, to tease out the pieces that are most useful, and to put them back together again as something new for presentation in front of an audience. And it also felt good to get feedback, much of which validated the very raw ideas I presented. Yay! Plus I got to meet some very nice and interesting senior scholars, who had good advice about how to present one’s work in SubTopic field, etc. Even though the process was intense and exhausting (Did I mention that fatigue is a big problem with Ehlers-Danlos syndrome? Seriously, if any of you readers with EDS or other chronic health issues have advice about coping with fatigue I am all ears.) and even though it meant three days of no chapter writing, it still proved quite useful. And stimulating. And fun. Fun conquers all.


Confucius in Moscow.

A few weeks ago I read this article in The Guardian by two scholars of Chinese philosophy. I have been thinking a lot lately about their suggestion to “see the world as capricious” and to not get too fixated on the fulfillment of a singular goal. To do so is to risk losing sight of the bigger picture and its multiple interconnections, and to literally lose opportunities and experiences that might ultimately turn out to be more important than the original goal or plan itself. I learned from my dissertation experience, that when I try to force myself to stick to an exact, militaristic writing plan that my productivity goes way way down. And as a consequence, I get really frustrated and angry with myself for not meeting my “quotas” or as a Stalinist might put it, for not (metaphorically) “fulfilling the Five Year Plan in four years.” I am thus approaching the book manuscript production process a bit differently. I know roughly how much I need to get done (two pages/day in June) in particular amount of time. Having the goal helps keep me on track. Or rather, as Anne Lamott would say, it gets my butt in the chair. But I also know that the goal is somewhat lofty, and if I don’t meet it every single day, I don’t panic. Why? Because the world is indeed capricious. Life has a way of intervening into the best laid plans and changing the course of everything, whether we like it or not. Interestingly, once writer-me accepted this, both my work-life and my real life improved. Yesterday was, for example, was an exceptionally capricious day. And even though I only write 150 words, I could not have been happier with the way things turned out, even though they started off quite badly.

It rained all morning. Hard. Everything was grey and cold. I woke up thinking about some residual health-related anxieties that have mostly now resolved, but were still nagging at the time. I had planned to go to the archive in the afternoon, but was also expecting a friend over for tea after work. Since the archive would have involved a long walk in the rain from the metro with a backpack, I decided that combining that with a grocery schlep had the potential to be too taxing. Better to take the shorter trip to the library and focus exclusively on writing. I wrote at home for half and hour. Cranked out 50 words and then headed to the library after lunch. After two hours of work and 100 more words, I headed off to the grocery store. I arrived home with a bag of cheeses, smoked fish, and cake, only to see that my friend had left me a panicked series of messages. She was on an article deadline and trapped in the library until 8 pm. She would not be able to make it over. Rats. What to do with all that smoked fish? I could have stayed home and kept working, since I had in fact not met my two-page quota. But I had also been invited to another friend’s exhibition opening. Didn’t think I would be able to make it originally, because of the tea for two I was planning to host. But now an opening. Instead of buckling back down at my laptop I headed off to see my friend’s show, which was part of a diploma exhibition showcasing the work of some of Russia’s up and coming contemporary artists. Describing it all would require another blog post. Suffice it to say, some of the works were great. All of the people were interesting. And since the rain had finally passed we all enjoyed the glow of the northern twilight underneath of one of Moscow’s landmarks, Vera Mukhina’s 1937 statue of the Soviet Industrial Worker and Collective Farmer:

Mukhina at Twilight

And as an unexpected bonus, I ran once again into my colleague from New Zealand. She hadn’t eaten all afternoon, so after the show she stopped by my place where we enjoyed our fill of cheese, smoked fish, tea, and cake. Time very well spent.


After a long, busy, turbulent hiatus from this blog, I’ve decided to return.  A lot of intense things have happened since my return from the Motherland, many relating to disability and adaptation. I’ve also been working away intensely, but mostly happily on the Big Writing Project.

I wanted to come back with a short citation from Nancy Mairs’ book, Waist High in the World, on learning to live well with disability.  Here it is:

“But that’s not the way disability works.  It does not leave one precisely the same woman one would have been without it, only (in my case) shorter.  It does not merely alter a few, or even a great many, details in a life story that otherwise conforms to basic narrative conventions: the adventure, the romance, the quest.  Instead, it transforms the tale utterly, though often subtly, and these shifts in narrative tone and type arouse resistance in both the “author” and the “reader” of the outlandish plot.”

Nancy Mairs, Waist High in the World, p. 182.

D.I.Y. Travel Crutch. Or the Joys of Modern Duct Tape.

As I have mentioned before on this blog, I have some difficulty standing on my feet for long periods of time.  This makes activities like visiting museums difficult, even with the help of the Evil Aid.  This is a problem, because my job requires me to visit art museums and exhibits, where I have to stand on my feet for significant periods of time.  My bum leg and wonky EDS joints have been making this quite difficult lately, to the point where I either hadn’t been able to finish looking at the displays or couldn’t pay them proper attention, simply because I was in too much pain.  So I decided things had to change.  With the arrival of my new Ossenberg crutches, which came in a pair, I was inspired to take on the museums with two sticks rather than one.  I figured it was the most readily available out, and if it didn’t work, I’m know it was time to move on to the next set of options (i.e. rollator, a set of wheels).  But here was the thing: I was just about to travel to Amsterdam and Budapest, mostly for work, but a little for pleasure.  I knew that I would be going to a lot of exhibits in both cities, and I was a bit perplexed about how to pack a second crutch.  I should say straight away that I was disinclined to simply purchase a long duffle bag, stuff my crutch into it, and check it in as luggage. Forearm crutches are awkwardly sized and shaped, and as such pose a safe packing challenge. I had nightmare images of the airlines tossing my stick around and bending it or shattering its cuff.  I also looked into the possibility of purchasing a folding forearm crutch.  This seemed ideal, but the best folding crutches out there (which are held together with a bungee cord like folding canes and collapse into thirds) are currently outside the bounds of my mobility gadget budget.  So I had to come up with something else, and quickly.  And you know, it may be cliche, but it does seem to be true that sometimes the best and most functional ideas come from the most unexpected sources.  A few weeks ago, at her mother’s suggestion, I bought the five year old daughter of a good friend a duct tape jewelry kit.  Recently it seems someone had the brilliant idea to add color and interesting patterns to the sturdy but easy to tear sticky stuff.  Gone are the days, dear reader, of silver metallic duct tape that you purchase specifically, because you think it will blend in well with your plumbing.  No. Now the stuff looks like this:



My idea was simple. If I couldn’t afford a folding crutch, I would simply fasten my second Ossenberg to the handle of my rolling carry-on carry with some fancy duct tape.  I would affix extra pieces of tape to the back of the suitcase just in case after removing the crutch to get through security or to put my things in the overhead, the first strip would refuse to re-stick.  Admittedly, the sticking and unsticking was a bit clunky.  But it was cheap, and moreover, highly effective.  No extra checked bags. Both crutches on board, as airlines cannot count mobility aids as part of your carry-on allowance.  Here is a little slide show of exactly how it worked:

1.) Choose your Weapon

1.) Choose your Weapon

2.) Affix to suitcase.

2.) Affix to suitcase.

3.) Go!

3.) Go!

4.) Unstick and stow.

4.) Unstick and stow.

This method worked through the infamous security lines at Infamous International Hub here in the Midwestern Megapolis. On SwissAir through Zurich. Through Schipol in Amsterdam and again in Budapest.  And the results of the two stick museum experiment? By and large, success!  Or at least, MAJOR improvement. It seems that for me, anything that involves a lot of standing will be a two stick experience from now on. I have no regrets. But I may buy stock in duct tape.




This one is going to be short and to the point. I have something sleek and attractive to share. Behold, the Ossenberg crutch:

Ossenberg 2


Lightweight, quite, and most importantly black, it goes with everything, from distressed jeans to cashmere skirts. And importantly for anyone who has EDS, the handle is anatomic.   I will admit, however, that the grip of my heavy grey aluminum PT-issued Aid has a wider palm rest, which was slightly better at relieving some of the pressure on the hand. Since nothing is perfect and the rest of the crutch design is so fabulous, I’m willing to cope with this particular flaw.  That is, I am currently thinking of creative ways to DIY myself a wider palm rest, perhaps using tacky foam. (Hint: If you have any suggestions, please comment!) Another fine feature of the Ossenberg model, which bears mentioning is the adjustment clip.  Rather than pressing fussy buttons to move the shaft up and down to fit it to height, you simply pop the crutch’s half-ring clips on and off.  Adjustment is quick and smooth, much easier on the joints, and a lot less frustrating.  The model also features reflectors:

Safety First.

Safety First.

Unexpectedly, the reflectors have attracted more attention than any other aspect of the crutch. I have been stopped twice now on the street and issued very sweet compliments just like this: “Wow I really love your cane! The reflectors are terrific! Please tell me, where did you get it?”

If instigating crutch envy does not constitute making a fashion statement, then I do not know what does.

Speaking of clothing, accessories, and disabilities, there is a lot more on that to follow.  Until then, stay tuned.