Writing and Medical Update

Today is, as planned, my day off. But it’s a good time for a report of where things are at.

I finished the drafts of two chapters that needed finishing this week, and produced more words than planned in doing so (Chapter 3 is at just over 17,000 words when I expected to come in around 13-14000).

Three finished, one to go.

I estimate I’m about a day behind in Chapter 4 (my last one). It could be close at the end of the month. I’ll have a better idea this time next week. Speaking of this time next week…

Medically, there are some new symptoms, though technically we are under the 1-week frame so I don’t know if they are real. I am stiff as hell. It’s like someone took my head off, poured a bunch of sand into my body, and then put my head back on. I move more slowly. Slowly enough that twice this week people have tried to rush around me (once at McGill, once in the metro) and I slow down the people with whom I am walking. I loosen up a bit after moving awhile but this is some serious old man shit.

It could be the onset of winter temperatures, which some people say makes joint issues on Lenvima worse. They also switched up my blood pressure meds a little over a week ago (I didn’t have high blood pressure until I went on Lenvima). I’m now on a low dose of chlorothalidone, and have been on it just long enough for side effects to kick in. Stiffness is on the list there too.

I will report back after living with it longer, when I will have a better idea if this is going to be a thing or if will pass.

November is Binge Writing Month

..and I don’t actually need to binge write. I need to finish.

I have no idea why people pick November for this, but there are NaNoWriMo and NationalThesisWritingMonth and AnyGoodThing. All of these wonderful initiatives seem to be good for writers and help them solve problems. Unfortunately, they don’t solve problems that I have as a writer.

For the last 6 years at least I have been puttering around in a set of ideas that has become a manuscript tentatively titled Diminished Faculties: A Political Phenomenology of Impairment. Apparently the biggest part is publicly announcing the project, so there you go. As the title suggests, this is not written to be a crossover hit and you should not expect to find it at airport bookstores. It is a bit of a departure for me as an academic writer. It has four chapters, with no intro (violating my first and highest rule of academic book writing) and no conclusion (which I firmly believe nobody will miss). There are two chapters on voice, one on hearing, and one of fatigue. I have not yet figured out where squirrels fit in.

Because I am very stupid/very smart/know myself too well/have unrealistic expectations, I committed to my sound seminar students that this manuscript will be the last thing we read in the course, so they could see my writing in all its glorious messiness before it is published and looks better. I keep telling them we perpetrate this fraud where we talking about writing like it sprung forth from the author’s mind fully formed.

I estimate that I need to produce about 12,000 words this month. Maybe a bit less or a bit more, and this number includes citations, bibliography, and quotes from other people. That part is totally within the realm of the possible. Word count IS NOT THE PROBLEM I HAVE. Distractions and self-doubt aren’t my issues either, so I can spend all the time I want on social media or noodling on musical instruments and don’t need to be too worried about how fast the words come, because they ebb and flow and because I am a very happy person with a word processor window open and my desk a mess.

In fact, my problem as a writer is I love being in the middle of writing. I love going down rabbit holes. I always take time for the bizarre cheap laugh even if it’s at best orthogonal to the argument. Can I write an entire history of the intertwined fortunes of psychoacoustics and information theory through cats? Why, yes I can.

So my problem is a) doing what I’m supposed to do and b) finishing projects that have no actual word limits or time limits. And because I’m writing in a slightly different idiom than usual, I also have some new technical challenges. But it’s time, dear readers, to get this one under review and to get comments from from friends and colleagues.*

So this November, I am binge-finishing.

Even so, my rough weekly goal is somewhere between 3-4000 words. What I need to accomplish in November: cap off one more chapter, and then turn a mass of ideas and notes and readings into a coherent argument about fatigue that is readable by human beings.

My campus time is circumscribed to Wednesdays and Thursdays (which are my days “for other people”) and an occasional afternoon or evening event. I write best in the morning anyway. I am incredibly, caught up with letters of recommendation. I have no theses to read. I have a bit of reviewing to do, which will happen weekday afternoons. I’ll keep the entertaining fairly minimal.

I have booked all Sundays off, and Saturdays are for writing work only. I sometimes like to work for 60-120 minutes after dinner, but only sometimes, and only when I feel like it. I am not going to push too hard.

Here are some dates:

November 26th, I will assemble the full manuscript (all 4 chapters in one doc, continuous pagination, ToC, and instructions for readers. I will then send it students. I might also just go ahead and send it to the press for review and to colleagues for comment, since I’ve done the work.

November 25th. I will spruce up the fatigue chapter, which Carrie will have read on the 23rd (or sooner) to tell me what it needs in short order.

By November 11th I will be working with a human-intelligible structure in my fatigue chapter such that I will have clear signposts for when parts are done.

November 4th and 5th, I am hoping to cap off my chapter on audile scarification, which needs a re-organization (it’s top-heavy with theory, and now repeats stuff that has been moved to the first two chapters). If I need some time on the 9th, I can also use part of that day.

This schedule only semi-factors in two things: 1) surprise work from other people, which I may have to accommodate in some cases (page proofs and the like) and 2) feeling like crap, which happens about once a week, and doesn’t always preclude writing (but might be good for the data-entry part).

When I am feeling good, I’ll do the intellectual heavy lifting. When I am feeling bad but good enough to work, that’s time for data entry–quotes, bib, looking stuff up, etc.

In case I fail, my students get a manuscript with an unfinished final chapter and I try to round things out the first week of December, or even the second week.

In December, I would like to play with my synthesizer more, so there’s the reward. Also, starting in February, Mara Mills and I will be making the run on the other book I’m working on. Yes, I’m working on two books at once. NEVER DO THIS.

*If you are eager to read the draft version, and are willing to a) provide comments on at least one chapter within 2 months of receiving it and b) promise not to post it on the internet or share it with other people until it’s cooked, you can send me an email.

White hot hands theory

It could be the weather.
We’ve had some particularly bad weather the last few days. I’ve started paying attention and it could be that my hands get tingly when there is a pressure change. So maybe bad and good pain days are not entirely arbitrary.

My sample size is too small right now, but I’m going to pay attention. Sadly, this appears to be a rare side effect in my online cancer community, so I don’t have anyone else to confirm with.

The tingly pain is only one of 3 side effects in my hands. The other two–hypersensitivity and dryness that leads to skin coming off–seem to have no relationship to the weather other not wanting a lot of direct sunlight on my hands for a long time.

The new normal implies that I know what normal is

I saw my oncologist today and things are basically the same as last month. I didn’t get my tumour marker readings but will update this if and when they come in. My tumour marker is down again, to 4.1. My next CT is in 3 months and we’ll see how that’s going, but it seems the drugs are doing what they’re supposed to do. I showed the doctor the moonscape under my right big toe but alas all there is to do is use a topical cream.

As to the rest, I know people with chronic illness and disability talk about “the new normal” but as of yet, I haven’t figured that out because my body feels like a variable. In part, it’s because the drugs I’m on have shifted in kind and dosage–this time around we are messing with a blood pressure medication because my BP is a little high. In part it’s just unpredictable: I have good and bad days with my hands (though my nail beds always hurt when I trim my nails now…weird), with sleep, with my feet (#moonscape), with energy. I can tell you what “normal” is like today, or this week, but in three months, who knows?

On the last, I’d say that’s what I learned most about this past month. I’ve had a couple weeks with back-to-back 13 hour days, and I mean 13 contact hours (teaching, meetings, events, doing stuff with people), not 13 hours of work while sitting at my desk. I used to be able to do that and maybe feel a little tired the next day. I’m a classic extrovert in that way–I draw energy from people, and I used to love it. This month, I was pretty wiped both times, and my recovery time is longer as well. So I need to adjust how I schedule (and overschedule) myself. I’ve always been an overscheduler, but the goalposts have moved, so I have to figure out where to aim the ball now. In the end, it will probably mean taking meetings on more days to spread it out, which will cut into time to do other stuff during the term (since I need to be vigilant about time off in order to be on when I need to be on), or taking fewer meetings. I do use Skype now and then but it’s not great for my voice (land line is better), so it’s really a fallback rather than something I want to do more of.

Here are some hot Canadian election takes for you

  1. As always, remember that an election is just an election. It has real implications, but party politics is the tip of the iceberg. If you want real change, there is a lot of organizing and work to be done outside the party politics system.
  2. I am relieved the conservatives didn’t win.
  3. It is impressive that after Trudeau’s last long stretch: India, buying a pipeline, SNC-Lavalin, firing the first Indigenous justice minister, brown face, black face, that he actually was able to stay prime minister. That says something either about the status of the liberals in Canada, or the abilities of his team, or how truly awful the Scheer conservatives are.
  4. We should be VERY concerned about the foreign money and fossil fuel lobby money behind right wing propaganda campaigns: pictures, rumour bombs, memes, hashtags, and bots.
  5. No party had a serious plan for decarbonization. WE SHOULD BE VERY CONCERNED.
  6. Alberta’s “alienation” is a complex phenomenon: it is a historically conservative province. On that level, I don’t know what to do about that. People are going to vote for values I find abhorrent. But: Alberta is also at the very centre of Canada’s petroleum economy and the reason the Canadian dollar is essentially a petrocurrency. I am not one for appeasing conservatives, but any serious decarbonization policy also needs something that can be pitched to people who work in and benefit from the industry. I don’t mean the rich: I mean the people who actually do the work of extraction. Retraining, using their skills for renewable energy, anything that make sense. I do get being scared about losing your job in the current economy. Scheer’s climate change denial resonates as a jobs program. So, there should be an alternative jobs program.
  7. Jagmeet Singh was great and should stay on as NDP leader. But the NDP needs a more concrete plan if they want to retake seats in Quebec, or build a base elsewhere and they need to do better on climate change.

And now…some good news

Tl;dr: It was a drug interaction. And my tumour marker dropped even more. I’m recovering now and eating normal food again. I love flavour!

I figured it out on Weds the 25th, as I was having a downright painful morning that made me 45 minutes late to my undergrad seminar. Between that and flying, I was pretty dehydrated by the time I got to Minnesota. I have no idea what clicked after all that time, but I realized something had indeed changed before I got sick. It took just over a week for the drugs to get out of my system, but I am now back to normal, except for needing some recovery time. The Minnesota trip was hard physically — I actually cut it short a day so I’d have time to recover here before this past week started, and I’m glad I did. I don’t think I’ve ever done that before. It was absolutely the right thing to do.

Okay, so about that drug interaction…

I’m on more different medications than I’ve ever been in my life, and they keep changing, so it’s hard to keep track. When my stomach troubles started on the first day of school (September 4th), it appeared to me that nothing had changed to occasion it. But in fact, exactly two weeks before that, my laryngologist had switched my proton pump inhibitor from Nexium to Dexilant because “it’s new and it’s stronger.” It took 4 weeks of misery for me to figure out that that could have been the cause. This is complicated by the fact that I have multiple pharmacists and doctors — so while everyone should have a full picture of my situation, nobody except for me really can or does, unless I am hyper vigilant in reporting and following up.

I emailed my oncologist a week or so into the diarrhea madness and he wasn’t terribly worried. But when we spoke on Thursday (I am only seeing him every 4 weeks now), he apologized, saying he should have realized it was Dexilant that was the problem, and that he never prescribes it to his patients. It was nice of him to apologize.

I have to say of all the side effects, this is the one that made me most miserable. Why, you might ask, versus the pain that means I need glove to cook or play bass, or blood pressure, or foot blisters, or dizziness? Or the brief periods of noun loss? Simple: none of those interfere with my enjoyment of life.

Imagine spending a month working full time and leading your normal life while you have the stomach flu. It’s usually a periodic thing that lasts 2-3 days and people take time off to recover. I pushed through. Maybe I shouldn’t have, I don’t know. It was brutal at time but because I thought it was the Lenvima, I was determined not to give up my daily life to the drug. At some point, I will write a post on what a friend of mine calls “self-overcoming.” It’s going to be something I’m thinking a lot about in the next few years. It’s also something that’s discussed a lot in disability circles: just because you feel like crap is not always a good reason not to do things. But sometimes it is.

While trying to complete a scheduling exercise for next year (and worried that my condition was “the new normal”) I also learned how shockingly few rights faculty with disabilities have at McGill. But that will be for another post.

Eulogy for Gary Thomas

Gary Thomas, one of my undergraduate mentors at the University of Minnesota, passed away on 29 August. I happened to be in town for the memorial on September 28th (I was at a conference upstairs!), and Richard Leppert–my undergraduate advisor and Gary’s close colleague, friend and confidante–asked me to speak as a representative of his students. I tried to reach back into my age 19-23 mindset to write this….

….

I’m here talking with you today because of how I met Gary.  Back in 1989, the U of Minnesota honours program had installed a 2-credit course called “Intro to the Arts and Sciences” where profs from different department would come speak to us about their discipline.  I was a first year undergraduate that year, trying to figure out what I was going to do in university. About halfway through the term, Gary came in to talk about the new humanities curriculum they were installing.  He was spellbinding lecturer on any subject, but I remember the hook that got me interested when he did a psychoanalytic reading of Star Trek that involved Spock being the brain, McCoy being the heart, and Kirk being the penis. My immediate thought was “you can do that in college?” It wasn’t too long before I was a humanities major.

My first class with Gary was his first ever offering of Gay Men and Homophobia in the modern West.  I think in 1991.  This was the first time he’d taught it and it was offered at night so that people who weren’t full time students could take it.  It was a major community event. People from all over the queer community flocked to the class.  I was maybe one of two straight men in the class, and in 1991 homophobia was still very thick and powerful, and it was still probably a rare or odd thing for straight men to mix with gay men.  When classmates asked why I was there—which was a frequent event in the first couple weeks—I replied that it was my first opportunity to take a class with Gary. Everyone seemed satisfied with this as a plausible answer.  That class was incredibly important for me as a teacher now, with students who are not only queer but genderqueer, gender fluid, and all shades of different.  On one level, they need to learn how difficult and dangerous it was to be gay way back in the 20thcentury—and I make a point of reminding them of the hard work of ACT UP, queer nation, and the queens at Stonewall (whose rebellion has taken on new meaning in the wake of trans liberation).  On another, the envelope-pushing nature of the class got me ready to make the same kind of space for my own students. And I have also tried to use my professor position to be useful to communities in Montreal.

Gary was a role model for me — a self-actualized adult, living the life of the mind, but with plenty of other interests besides his job, and who was confident in who he was.  When students came to his home at the end of a term somewhat later in my career, I remember being impressed at the kitchen and the organ. Our tastes run differently, but I now live in a place with a nice kitchen and a lot of musical instruments. Draw your own conclusions. And he was totally unpretentious. I remember he once said to a group of us that he was proud that he had students calling him at home—remember, this was in the days before email at universities, and he was unusually accessible. He encouraged students to be themselves around them and he made things easy for us in the right ways.

Gary also gave me some of my first tastes of academic research: I helped build a bibliography for his then brand-new Music as Discourse class.  Later when he suddenly had another research need, I got the call to go through old issues of Christopher Street in an archive in St Paul.  That was for Queering the Pitch, the first book of queer musicology. I remember being over the moon when I opened it up and saw my name in the acknowledgments. But Chip Whitesell, another Gary student who is now my colleague at McGill in the School of Music, reminded me that that work was a revolution in musicology, and that for gay musicologists, it wasn’t just the academic substance that mattered, it was about making space in the field to be out.

We didn’t keep in touch that much after I went off to grad school, but I remember visiting him once in Folwell Hall, with my partner Carrie, and we were joking about the awkwardness of some of our straight male professors. In fact, my education at Minnesota had failed to prepare me for graduate school in only one important way: large swaths of the rest of the world had not caught up with what was happening at Minnesota in those days.  Gary was a huge part of that. But more importantly for me, he was something every university student fresh out of their parents’ home needs: an adult I could look up to.  He wasn’t perfect—more that once we had to reschedule an appointment because he wasn’t so good at keeping a calendar—but even his faults spoke to his love of life. I will never forget his power as a lecturer, the gentle way he made space for us to just be, his unending kindness, and his love for life.  Rest in power, Gary!