A Shift in Expectation of Self

I really like this post on body policing, and in particular, how people seem to feel qualified to tell someone with a chronic illness that if they just did X – largely either adopt some quack routine or exercise – that all their problems would go away. In particular, I really liked this:

You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away?

You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain about being sick and sometimes even skip out on obligations so you can rest up.

You hate being sick.

Admittedly, this was already on my mind, as this morning the fiancé1 and I were talking about some general goals and ideas of accountability, and he asked me to talk a bit more about how exercise can be a challenge with my chronic pain.2 For the first time, I really had to think about the activity level that I held myself to as “the standard:” I was at one point doing yoga and pilates twice a week each; going to the gym three times a week; hiking and walking all over the University of Washington campus; and going dancing several times a week.

I’ve failed to meet anything even nearing that level of activity since I left Seattle, though, and it’s been discouraging for a number of reasons. Exercising hurts, aggravating my chronic pain. I know I need to do this, but I don’t like being in pain, so it’s a disincentive. The fiancé listened to me complain a bit, and then asked a question that led to a lot of coins dropping all at once: he asked if, after a period of time, I’d “break through” and reach a point where exercising didn’t hurt, like most folks do when they’re just getting in to shape.

And I realized that I? Do not know. Today is really the first time I put together the other half of that equation: I was able to be that active while at UW because I was on a cocktail of medication that managed and controlled my pain. While dosing and makeup varied and was continually being adjusted, during most of this period of time, I was taking: 120mg XL morphine a day; 8-10 vicodin as needed for breakthrough pain; anti-nausea medication; two different anti-depressants to help boost the effectiveness of the painkillers; and a rotating schedule of sleeping pills. Not infrequently, this would all be topped off with an anti-anxiety medication (useful for tests and doctor appointments, which were almost always full of pain). So yes, no wonder it didn’t hurt to exercise – I had done a very good job at stripping away the pain.

It’s a bit weird and a bit of a relief to see that I’m actually not a failure or weak for not being able to live up to that standard of the past; I’ve managed to largely stop taking all medications for my pain (with exception of the occasional vicodin or high dose of Advil), but this also means I need to re-evaluate what I can and cannot do, and stop holding myself to a standard that I was only able to meet due to prescribed medications.

It is a strange shift in belief and concept of self, if nothing else.

  1. Oh yeah – hey, I got engaged! I guess that didn’t make it on to the blog, although it hit Twitter and I assume most of you read this from there. []
  2. Sappiness alert! One of the many reasons I love him: he has taken the time to ask and learn about limitations and range and how life can be impacted by living with a chronic illness, and I’ve never once felt like this was anything other than an effort to get more knowledge so that he can do his best to support and encourage me. []

Life in a UHaul

I drove out of one state, through another, and into the new state I’ll be calling home today. The entire way down, I was aware of all of my possessions, my entire home, ‘on my back’ behind me (well, in the UHaul I was sitting in). It was a somewhat eerie and odd feeling; the last four times I’ve moved, I either wasn’t driving the UHaul (on my cross-country move), or they were in-town moves where I just used my car. And the last time I did use a UHaul – a decade ago – it was before I returned to academia, and I had few books.

The process of loading the UHaul was interesting. It’s very neat and organized and orderly in the very front (Grandma’s Attic/ part closest to the cab) of the truck, but by the back of the truck, you can see that a combination of tired and fuck it has set in, and it’s all sorts of chaos and “shove it in there” mentality.

I was thinking of this, between finishing emptying out the apartment, joking about it being a bag of holding, and cleaning on the way out. (Cleaning is another topic entirely – how often do we think our place is clean without realizing how dirty it would be if we took it apart completely?) There is always a point in moving I reach, where the best idea is just burning it all to ashes and moving without whatever things it is that are inspiring this feeling. But rational thought always takes over – not greed; I threw out quite a bit this move, and I’m sure I will continue to as I reevaluate on this end – but practicality. Lamps are necessary. Clothes are necessary. If I want to continue as an academic, some concession to books are necessary. These are all items and pieces of the kind of life I want, and in two weeks when the bruises and cuts and scrapes have healed, I’ll be happy to have the tools I need to continue to pursue my academic, professional, and personal goals. (More importantly, perhaps, my body in general will be happy I still have all the concessions that I’ve made to the RSD/CRPS.)

Still, it’s hard not to remember a more flighty and carefree life, the one before I decided I wanted to pursue study as a way of life. Then again, this was also a life I had before chronic pain; perhaps the two are related.

The Invisible Made Visible

While I have never been terribly quiet in discussing my disability, I also acknowledge that I am, for a disabled person, in a privileged class. I can “pass” as normal – that is, I don’t look outwardly disabled. There are a host of issues that come with this, including a lack of “validity” from both normals and disabled folks. (I don’t look “sick”, so how can I be “sick”? Comes from both sides of the aisle.) But, problems aside, I fully acknowledge that it is nice to go out in public and not have the public gaze focused on me. Been there, done that, definitely didn’t like it.

Which is what makes this so strange
The invisible made visible. on Twitpic

I haven’t been visibly identified as disabled in a long time. When I fly, for various reasons, I normally fly United, and I pay for the upgrade that allows me extra leg room and space. This comfortably addresses my issues, and there’s nothing else I really need to do, other than make sure I select smart seating when I am booking my flight.

For various reasons, I am flying Southwest today. I haven’t flown Southwest since I was a child, so I had no idea what to “do”. I tried to contact Southwest air via their Twitter account, and they promptly ignored me. Their customer service agents, over the phone, told me there was nothing they could do – just try to sign in early enough to get priority boarding. Sigh. So I read over the information on the website, and they said to contact customer service at the airport – so I did. I explained that I am disabled and that I do need advanced boarding and he asked for a doctor’s note.

Oh, from the doctor I haven’t had since August. Sure, I’ll get right on that thing that wasn’t mentioned on the website.

I volunteered to show Adam, the customer service rep, the pain patches covering my right arm. He laughed, said that wouldn’t be necessary, and explained my boarding process, handing over the above blue tag.

Now I am sitting here, and irrationally, I feel branded. Like everyone is staring at me – which of course isn’t true, unless you count the adorable moppet who appears to find me the most fascinating thing ever. Still, next to me is this bright blue boarding pass, clearly printed PREBOARD – and why.

Is the person across from me looking over his newspaper to look at me? Figure out what is wrong with me? Wonder why I have armwarmers on, which cover most of the pain patches and hide them from visibility? (Practically speaking, they keep them on, but is that what it looks like?)

Is the woman with the three young children trying to figure out why I get to board ahead of her?

Is that a scowl from the very well-dressed man the fact I might get the seat he wants?

Maybe more importantly, why do I care? Why does it feel so exposed and vulnerable to have people know I get to board a whopping few minutes ahead of them? These are people I don’t know and will never know; we will be spending at most three hours together on a packed flight.

And yet, and yet. I sit here and wonder: should I exaggerate my limp? Avoid full mobile range of my right arm, to emphasize that I am indeed broken, and not just gaming the system? Should I put on airs and affected manners just to verify I am legit, really and honestly? And ultimately, if the gate agents don’t care, why should I?