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!

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.)