Thursday, September 20, 2018

Negotiations

I keep trying to figure out how to start these posts.  It feels to me, in some ways, like starting in the middle of the story - giving updates on where I am now, presupposing everything that's happened in the last year.  At some point, I'll go back and write about how I got here.  But not today.

Today, I'm thinking about how I've been learning to negotiate with activities and objects that I really never had to think about before.  One interesting aspect of RA, for me, is that, while I'm very lucky and none of my joints has undergone remodeling, they certainly aren't unaffected.  They can be uncomfortable quite a bit of the time, and sometimes actively painful.  But worse, for me, is that they often feel weak.  In a lot of ways, that is the feature of this year that I've had to bring all of my self-compassion and mindfulness to bear on, in order to avoid ruminating and spiraling into worries about a future that hasn't happened yet, and which may never come.  I grew up playing piano - my first real job in high school was as a piano teacher.  I knit.  I spin.  I write by hand (and love my fountain pens and Traveller's Notebooks).  I ride my horse.  I cook.  In each of these activities, I have always taken the strength and dexterity of my hands for granted.  Up until a year and a half ago, I had never cut myself with a kitchen knife - ever.  (And I cook a LOT.)  I zested my thumb with a lemon zester once (I don't recommend it), but that's it.  And then in the course of two months (February and March 2017), I cut myself twice, once badly enough that we sort of stared at it for a while and wondered whether it needed stitches (especially when it would NOT stop bleeding for half an hour, while I put pressure on it and held my hand over my head).  It was so unlike me that I didn't quite know what to make of it - I am not (was not) clumsy with my hands.  It wasn't until much later that I put it together, and came to think of it as the first joint-related warning sign that all was not well.

Rereading that, here's the statement that I think captures the emotional tension of the last year:

I am not (was not) clumsy with my hands.

That's a lot to come to grips with.  (ha)

One place where I have to do a lot of negotiating is at the barn.  The spigot handle of the hose I use to fill Disco's water bucket is often really tight, and the nozzle we've attached to the hose takes me two hands to open up and close again.  I have learned to notice the frustration and anger that arise when I struggle with these tasks.  Mostly, I manage to take a deep breath, laugh a little, and go back and take it slowly.  Mostly.

On days when things hurt, one of the toughest barn jobs is also one of the most ubiquitous - picking out Disco's hooves.  This is something that I need to do before and after every ride (and I also do it after turning her out) to make sure she hasn't picked up a stone which would stay lodged in the frog of her hoof, or under the shoe - that's uncomfortable, and not so good for her.  It also gives me a chance to check her shoes, and the condition of her hooves, and how her feet and legs are doing.  But hoof picking is a tough task.  It involves bending over, picking up a hoof, and holding it while I dig out anything that's gotten stuck in there.  D's pretty good about it - she picks up her hooves politely when asked (she even anticipates which hoof is next), but she doesn't do all the work of holding them up, and, lacking fingers and wrists, she can't do the digging out part (that's my job).
 That's her back right hoof.  I'm facing backwards, with my right shoulder against her right back leg.  I usually hold her hoof up with my right hand, but (in the interests of trying to take a picture), I'm holding her leg up between my knees, and the camera is in my right hand.  I hold the pick with my thumb on top and fingers on the bottom - the circle shows the pick itself, and the arrow is the direction it's moving.  The goal is to get all of the dirt (and whatever it's hiding) out of there.
For fun, I also took a video of what this looks like.  But my main point here is that this job works my back, both wrists (one to hold up the hoof, the other to pick), and especially the thumb joint and wrist (which has to use a rotational movement to get the job done) of the picking hand.  And I get to do this eight times (one for each hoof before and after riding) whenever I get out there.

At the same time, I'm aware of how good for me my time with Disco is.  Physically, it motivates me to keep moving - and believe me, riding a horse like her in the ways that we ride takes focus, concentration, and a lot of physical work.  Emotionally and spiritually - well, there's nothing like spending time with a half-ton dance partner to ground and uplift at the same time.

All of this captures an interesting tension that exists for me at this stage of the disease.  On the one hand, I am feeling and living the things that are harder for me, or that I have to negotiate differently than I have in the past - and I am sometimes feeling that as a loss.  On the other hand, I am keenly aware that I haven't (yet?) had to give up anything, and that I am so very lucky to have that be true, and to have Disco (among other things and beings) to motivate me to keep it that way.  I'm guessing that I'm not at all alone in living that tension, or in understanding the importance of finding and embracing those motivators.

And speaking of motivators - here's another one, with something to celebrate.  Kivrin, my 17-year-old high school senior, got her license on Tuesday!  She's happy, and I'm happy for her (and for me, as you might imagine).
You go, girl!

Tuesday, September 11, 2018

And back again!


I’ve been wondering why I didn’t formally shut down the blog and say goodbye to it.  I was ready to, last February, when I hadn’t written another post in a while, and was feeling pressure to do so.  At the time, as I contemplated actually stating to the world that this phase of my life is done, I felt relief.  There were a lot of reasons for that.  One was that I felt (and I still feel) that I maybe have something bigger to write, and that I wasn’t getting to that.  Frankly, I was also feeling overwhelmed by everything that was on my plate, and the nagging sense that the blog was there, needing to be fed and watered, didn’t help. 

Without fully articulating it, I think I also had, and have, the feeling that I’m going somewhere else in my life, and that, while writing about knitting isn’t something I never want to do again, the mulling thoughts that want to come out of my fingers and onto the page, the conversations that I want to have with other people – those are much less about knitting right now, and more about other things.  And that’s kind of scary.  This is, after all, the blog of the knitting linguist.  And if I’m not writing about knitting or linguistics… I was about to say that I worry about alienating people who came here to read about knitting, but what am I talking about?  This blog has been essentially defunct for some time!

But last week, I had an experience that really made me want to write about it, even if no-one actually ends up reading it.  And it made me realize that at least one answer to the question of: if this is not the blog of the knitting linguist, what is it?  Is: the blog of the knitting linguist, this time with RA.  Of course, that’s only one answer to that question, but it’s a relevant one. 

I think I’ve said before that, last summer, I was diagnosed with rheumatoid arthritis.  A lot of other weird things happened last summer, too, but that one’s been a bit of a focus this year.  I’ll talk more in another post about how that diagnosis came about, and about how lucky I am that it happened as early as it did in the course of the disease, but for now I’ll just say it’s not raging out of control, but neither is it really under control, which is an interesting liminal state to be in.  It means that there are times when I feel that I am not quite as able to do the things that I was able to do a year and a half ago.  And when that happens, and I feel the cold wind of “what will this be like next year”, that I come face to face with a very different kind of understanding about access and ability and difference.

This time, it hit me in a surf shop.  One thing I have been wishing I could do is to swim more in the ocean.  And by “swim more”, I mean “swim at all”.  The ocean has felt too cold to me to swim in for some time.  Call me a wimp, call me temperature sensitive, call me whatever you want, but while I’m happy to walk along the beach, and (depending on the season) get my feet wet looking at tide pools, I haven’t gotten in to swim in a very long time.  I particularly, this summer, began to wish quite strongly that I could snorkel.  So we rented wetsuits and snorkeled in La Jolla a few weeks ago, and I was delighted.  A wet suit changes everything!  Who knew?

I’ve been putting off going into a surf shop to try on wet suits – that’s a whole lot of decision-making and choosing, and I wasn’t motivated to get it done. But we drove by one with a big Labor Day sale sign out front, and Rick pulled into the parking lot, and there we were.  So, we found some suits that looked like they might work, and off I went into the dressing room.  Where I found the first indication that I am really not represented in Wet Suit Land:

I’m nowhere to be seen on that chart.  I’m a titch over 5’2”, and I usually weigh somewhere between 136 and 142.  My measurements are, loosely, 36-30-41.  Check out that chart again.  Apparently, to weigh what I weigh, I’m supposed to be five inches taller.  I mean, I know that neoprene is stretchy, but honestly, people.  Rick’s not on that chart, either (he’s 6’6”), nor is my niece, who is tall and very lean.  All I’m saying is it doesn’t make a girl feel warm and fuzzy.

But that isn’t even why I’m writing this – I’m so used to not being represented in clothes sizes that I’m pretty inured to that reality.  Nope.  What really hit me is that wetsuits are just not made to be easy to get into.  I know that they need to fit tightly in order to serve their function.  But I can’t tell you how hard it is to pull skin-tight stretchy neoprene up and down arms and legs with hands and wrists that are (even minimally – and imagine for folks whose RA has gone further than mine) weak and painful, with tender joints.  This is made much worse by the way the suits are built.  The ones I tried on first had back zippers.  That could be good for access, but those zippers are short, ending well above my waist, which means that the tightest part of the wetsuit (the waist) has to come up over the widest part of my body (the hips; see above), without an opening to help it along.  And then we discovered that most of the newer suits have, instead of a back zipper, a zipper that runs along the front left collarbone.  This means that the whole, skintight suit is like a body suit, with the only opening being the one at the top.  This is FAR more inaccessible than the already-difficult short back zipper. 

And all I could think was, how do people who hurt more than I do, have more weakness than I do, have less mobility than I do – how do they do it?  Or is it assumed that they do not?  That they don’t want to get into the big blue?  Because I guarantee that some of them do.  Maybe the assumption is that dealing with being cold is the price of swimming with disability.  But for me, at least, the cold would make everything worse.  It would kick off my Reynaud’s, cool my joints and make them less mobile and responsive, and generally hurt.  This wetsuit is going to make it possible for me to swim at all in the cooler water.  (And note, I’m not talking about really cold water.  When we snorkeled in La Jolla, the water was 74 degrees, and even with a wetsuit, I was chilly at times.)

Trying on four wetsuits was enough to slow me down for the rest of the day.  Typing this took up the last of what my wrists could do that day. 

None of this is to say that I didn’t know that mobility is a presumed feature of life.  I spent a lot of time with our grandmom as she aged, and was acutely aware of the way that the structure of many places made it difficult for her to get around.  And was also acutely aware of how frustrating and embarrassing that was for her.  I have had students with disabilities both visible and invisible.  Moving around campus with them has been an experience in frustration, in seeing the degree to which they had to plan each move of their day so as to get to class on time, get food between classes, access the bathroom, access space in the classroom.  Those experiences made me careful not to judge someone who seemed to me to be moving more slowly than I’d expect, using the elevator for one floor, taking out a parking placard.  It also made me aware of how invisible those access difficulties are to most members of my community.

As we all know, knowing about something is one thing, but living it, even just the edges of it, is different.  It’s interesting, and frustrating in a new way, to be inside the edges of this problem, instead of walking alongside someone while seeing it from the outside.  It’s a good reminder of how important first-person narratives are, of how critical a range of voices can be in any discussion.

It also makes me think that somebody should be able to design a wetsuit that’s not so bloody difficult to get into!  (ETA: Someone did.  They ain’t cheap.)

Monday, January 15, 2018

Back again

Well, that small hiatus was brought to you courtesy of the Linguistic Society of America conference.  I actually think it might be worth writing, at some point soon, about what I was there for; I was privileged to be able to attend and participate in a workshop which brought a number of indigenous scholars to the conference so we could talk about how to incorporate indigenous ways of knowing into the academic discipline of linguistics.  It's definitely worth a post (or ten).

Meanwhile, I am still playing with the camera when I can, and today's post is trees.  I'm not sure I've mentioned my lifelong love affair with trees before.  Some of my happiest memories are of climbing trees as a girl, and I used to scope out the best trees for climbing and sitting in wherever I went (I had favorite trees on my college campus, for example; finding trees that are good to read it is especially important, in my opinion).  I've somehow lost the climbing habit, but I never really lost the practice of paying attention to trees, and in the last couple of years, that habit has only gotten stronger.  I've finally given myself permission to just greet them out loud, and it makes me very happy.  For many years, my affections were given to live oaks and to redwoods - this is perhaps obvious for a Californian.  But any time that I have really become located in a place, walking the same trails day after day, week after week, year after year, trees sneak up on me.  My first memory of the bay laurel, for example, is one of scent, of walking on my favorite trail above Berkeley's campus and smelling something spicy and warm and wonderful, and thinking at first that it must be someone's cologne.  But I kept smelling it on my walks, and the day came when I finally tracked it down to a tree.  That scent always makes me think of ferns and redwoods and fog and my friend Leela and our dogs.

Recently, it's been sycamores.  I never really paid attention to sycamores before, and then I noticed this one particular sycamore, which, having begun its life in the creek bottom, decided that it needed more.  It has flung an arm up the bank of the river, planted it near the side of the trail, and hoisted itself for the skies.  You have just got to admire a spirit like that!  Nothing's going to stop that tree from claiming what it sees as its rightful share of sunshine.
One of the things I've noticed about sycamores on my walks is how they reach up above the live oaks in the river bottom.  They really do like to have their feet wet, but their branches high in the sky.




My little damaged live oak continues to recover from losing most of its crown.  I check in on it regularly.



All right.  I am knitting, and have things to show next time.  But in the meantime, low tides keep calling, and we keep going.  Here's a photo taken at the last low tide just before Tess left for London (!!).  Happy Monday, y'all!

Wednesday, December 27, 2017

Fun with photography

My big Christmas present this year (per my request) was a telephoto lens for my camera.  I am really fairly camera-ignorant (working on it), so I totally rely on my sister-in-law (who is a serious photographer, see: GerrBear Photography) to enable guide me in my much more dilettante-level camera play.  Thanks to her, we got a Sony a6000 last year.  Ostensibly, the reason we got a new camera (and I say we, but I mostly mean I) was because we were hoping to hike the JMT last summer.  We figured we'd want an excellent camera, but also a camera that was lighter than our digital Nikon SLR, so we got the Sony for my birthday in February, to give us time to play with it and get it all figured out before we hit the trail.  However, life (in the form of an unexpected need to do summer school for my younger daughter) and the Park Service (in that permits to hike the JMT southbound from Yosemite to Whitney Portal are nigh-impossible to come by) conspired to make that goal unattainable.  Rick and Tess did a shorter backpacking trip instead, and put the camera to good use.  But let's be honest, it's mostly mine (my argument here being that I'm the tiny one in a family of large-handed giants, so I deserve to have a camera that's easier to carry around - right?).

So for Christmas, I got this 55-210 telephoto lens, and I've been fooling.  My beloved SIL also got me an online class to learn more about my camera, which I am really excited about.  I'm committing to making more space for creativity in this next year, and taking pictures is one of the places where it's easy to play around - no chance I'll break something, or waste something (no film!), or any of the things that can feel inhibiting.  Just me, taking the walks I'd take anyway, keeping an eye out.  Which I did twice in the last couple of days.
I seem to be focusing (ha) on a a few different areas, now that I can capture them more clearly with my camera.  One of those is birds.  Birds in the water, like this blue heron.
And this - I want to call it a loon, but we don't have loons.  Anyone know who this is?

And birds in trees.
I love crows and ravens.  They have so much to say, and they are so curious and sure of themselves.

This little guy stayed still for me until I'd gotten my shot, then went about his business.
And birds in the air.




Of course, birds aren't the only ones whom I can see more clearly.  This guy posed for me, quite happily:



Next time, trees!  What are you playing with these days?

Wednesday, December 20, 2017

A deep breath, and then...

I don't know about you, but I have this sneaking suspicion that someone put Christmas earlier than usual this year.  It might have something to do with the timing of my semester: grades are due tomorrow (I managed to get them filed on Tuesday), and my online intersession class begins today.  So I've been madly grading for the end of last semester, and prepping a class to start online.  My annual conference was also late this year (the weekend after Thanksgiving, instead of the weekend before); that probably has something to do with my sense that December has gotten, shall we say, compressed.  I've also been heavily involved in helping Kivrin get ready for finals - her last two (and the hardest two) are today.  And, of course, there's doing the part of Christmas preparations that have to get finished in advance of the actual days leading up to the holiday (presents for people I love who are far away; thinking in advance about food that we need to get from the farmer's market; etc).

So all of this is to say that, after several weeks of unremitting work (trying to compress my full-time job into the shortest possible days, then coming home and doing hours of homework with Kivrin each evening and weekend, thinking about holiday plans, etc), for one brief and shining moment, I have a very tiny breather.  My class has successfully launched, and there'll be nothing to grade for a couple of days while students get their feet under them.  Kiv's finals are over, and her semester is done.  Most of the holiday shopping is done, and now I get to think about the things that I really take pleasure in - cooking for and spending time with the people that I love most.  And even that I can't do right this minute.  I should clean the house, but that, too, can wait. 

It's weird to be at semi-loose ends.  It feels almost decadent to think: I could (gasp) knitIn the middle of the day.

So I'm not (yet).  I've finished the socks for my friend's son's graduation - I just need to graft the toe and weave in four ends, and they're good to go.  And I'm beavering away, for as much as my hands will allow, on the special birthday present I'm knitting for a friend, out of copper wire.  I was inspired by a fabulous exhibit at the Mingei maybe a month or so ago, and I promptly bought a rather outrageous amount of wire, with all kinds of plans for it.
I'm finding, though, that I can only knit so much of it at one time before my hands begin to hurt in a way that makes me think I should take frequent breaks.  I should also say that I'm not starting with jellyfish (although I have some ideas involving a lightbulb and a hanging lamp...), but we'll see how things go.

I might also go with the girls to the beach this afternoon.  It's low tide, which is the right time to take the dog down and see the sunset.  Nothing makes Tilly happier than the beach.
And I'll get to play with my camera.

Thursday, December 14, 2017

Moving along

It's the end of the semester, which usually means at least some degree of chaos.  This semester was more chaotic than usual, with the fires that broke out here in North San Diego County.  Campus was closed on Thursday afternoon (leading, I understand, to the usual madness of trying to get nearly 20,000 people off campus all at once; I am SO glad that I left early that day!), and stayed closed until Sunday afternoon, meaning that I missed my last day of class, and fielded a lot of worried questions from students in the lead-up to finals this week.  We were largely out of the way, although the Lilac fire was close enough that we kept the pets indoors for a couple of days, in case we might need to evacuate, and one of my friends ended up staying here for a night when her neighborhood came under mandatory evacuation orders.  If you've been following any of this, you also know that San Luis Rey Downs lost a lot of horses, so there's been a lot of talk and sadness and stress about that at the barn where Disco lives.  She was safe, but we have all been keeping a weather eye on the horizon, looking for smoke.

The winds died down for a few days, but we're expecting that they might pick up again today and tomorrow.  And it has stayed brutally dry.  Last week, the humidity hovered between 3 and 5%.  Lately, it's been up around 15% (woo-hoo!), which, if you've never lived somewhere quite this dry, is really pretty awful when it stays that low day after day after day.  You just can't stay hydrated and moisturized enough.  It also means pretty dramatic temperature swings.  We're getting up into the 70s during the day, but during my morning walks, before the sun comes up over the hills, it's around 40 degrees.  (I know - not that cold for you guys, but it feels pretty chilly to me!)
 The grass crunches under our feet as we begin our walk, and the leaves are frosted and beautiful.
The trees stand, patiently waiting for the first rays to touch their uppermost branches - I can almost hear them sigh in relief as the sun comes above the hills.  And I can definitely hear the crows hollering as they seek out the warmest places to perch and warm their wings.

The house stays cold, even as it warms outside.  This is a benefit on hot days, but right now, when it's 65 inside, I'm pretty chilly.
Loving my warm sweater!  Who knew it would be useful here in Vista?  (I kind of figured this would be a sweater I wear to the mountains in the winter, but it's also good for sitting at the computer and working.). Gwilim thinks it's cold, too.
Meanwhile, it's all grading, all the time here.  I think this picture pretty much captures my current state of affairs.
Stay warm and safe out there, y'all!


Tuesday, December 12, 2017

Some travels

My yearly conference of choice is the American Anthropological Association's Annual Meetings, which always come either the weekend before or after Thanksgiving - this year it was the weekend after.  It moves from place to place, alternating between East coast, the center somewhere (last year it was Minneapolis, and I got to see Ellen!), and the West coast.  Since it was DC, Tess flew in to meet me, and I got to have dinner with my brother, who lives there.  We don't see one another often, so it was lovely to get to visit, if only for a brief while.

I'd hoped that Tess and I would get to do some touristy things.  I wanted to see the Smithsonian's Museum of African American History, but wasn't able to get tickets in advance, and I didn't find out until too late that they open up same-day tickets in the afternoon; I would also have liked to go to the Museum of the American Indian, which I adore, but this conference is pretty insane, and I just couldn't manage to get away.  To give you an idea of how insane, there were 6500 attendees this time around, and there are usually somewhere around 40 concurrent panels at any given time.  Very few of which I got to attend this year, because I was elected to the Linguistic Seat on the executive board, and much of my time was spent in - you guessed it - meetings (which is how I made so much progress on that sock I posted about last time).

Tess and I did manage to get away for a few delicious meals (Ethiopian food, mmm....).  And some shopping (new shoes!).  And some tea.

You can see that knitwear was involved in the weekend - that's the cowl I knitted for Tess, getting good use (I thought about saving it for Christmas, but gave it to her when I saw her at Thanksgiving instead - I am very bad at holiday knitting in general, because I tend to hand out my FOs as soon as they're off the needles; Rick already has his Christmas socks, too).

We did manage a quick visit to the Hirschhorn Sculpture Garden at sunset.
Where we visited Yoko Ono's wishing tree, and made a few wishes of our own.
(Blurry because it was really getting dark.)  Serendipitously, we got there just in time to hear the sound sculpture that is part of the garden, and which is triggered by the fading light of sunset.

We walked on the mall in the gloaming.

We also took a last walk in Rock Creek park on Sunday afternoon.
Appreciating the fall foliage
before taking the long steep (!) escalator
down to the train, and thence to the airport, and making our various ways home.