bywyd

Today has been a horrible day, in a ghastly week. I am waiting in dread for what it will throw at me next

I discover today is cfs Awareness Day. (Thanks mewithme !) Felt I ought to post something. But (ironically) I have very few spare spoons today. So.

5 things I've learnt in the past year about cfs.

1.  It might be a retro-virus.

2. I can spontaneously develop new (for me) symptoms at any time. This year it has been joint pain. Fun times.

3. There is a word for the thing where I lose words or completely lose the ability to speak. Aphasia. I think.

4. The chaotic disorganised disaster that is my home and makes life so much more difficult is so common with sufferers it may as well be counted as another symptom.

5. Dreamwidth makes cfs more bearable. :-)

Thank you to all of you who make Number 5 true.

Apparently, more than I intended. I have to start by saying that I am absolutely pants at choosing names. That part on school-camp where you had to name your team? I almost preferred the (several) times my hair got caught in the ropes while abseiling.

So when the time came to choose a name on Dreamwidth, it didn't occur to me to choose a name that wasn't ... well, a name. Which is ridiculous, since I'm here because of someone with a non-name name. Gwyn has a similar meaning to my RL name. But it seemed to me not distinctive enough, so I needed another part. Here is where we encounter language-not-my-own fail. My own RL name has nuances of "light" - Gwyn does not (It mostly means "white"). But I thought I would try something roughly approximating "light and life."

Then I fell in love with the word "bywyd." In Welsh it means "life." But there is a play on words here. In several of the psalms, the psalmist seems to be suffering illness or disability. He writes "I am become a byword." (eg psalm 69.3 "I am weary with crying out, my throat is parched" verse 11 "I made sack-cloth my clothing and I became a byword to them.")  These psalms resonated very strongly with me, especially in the second 6 months of my illness (ordination deferred indefinitely, living back with parents, too ill to care for myself, nearly incapable of finishing the simplest essay) So, my name had to include "Bywyd."

Now, if I had been thinking I would have gone with just Bywyd. But no, I went with Gwyn Bywyd. A while afterward, I had the horrid moment of realisation that my newly-set-up online name could be read as some white supremacist shit. Eeeekkk. I just kinda crossed my fingers and hoped that it wouldn't seem that way. I am tremendously grateful to llygoden (who actually speaks Welsh) for a discussion about this issue.

As to why this whole name thing was in Welsh, which I do not speak, when I actually have a fair few languages (mostly dead) Well. As a child, we lived in England, and did a lot of travelling on the weekends. I felt an instant and deep connection to Wales when we visited that I've never experienced anywhere else with the same intensity and speed. It was an intensely spiritual experience, that made an enormous impact on my nine-year-old self. We later discovered that we do have some Welsh blood, though Scottish, Irish and Scandinavian are much more prominent in our family history. Our visit to St Winifred's Well was one of the times in my early life when I was most aware of the sacred. I am utterly thrilled to be planning my first visit back there in June. So soon now! \o/

So, gwyn bywyd will be my name for now, until the fabulous Dreamwidth folks create a way of changing names, after which it will be bywyd.

I'm more than a little puzzled and irritated at myself with regards to recent news that my mother may have Lupus. Her mother had Lupus. Which has, of course, led to a fresh round of the game "maybe you have xyz not cfs."  (A fun game for all the family to play! Not to mention random strangers!) I'm irritated at myself for engaging in this for a number of reasons, not least that I have been checked for Lupus, at least once a year, since falling ill. Ditto thyroid problems and diabetes.

But I think the biggest irritation is that I am implicitly engaging in a sort "hierarchy of disability" in these discussions. What am I unconsciously implying by participating in this? Is Lupus somehow more "real" than cfs because there are diagnostic tools and it has been recognised for longer? That is something I most emphatically do not believe with my conscious thought-processes, but I'm looking suspiciously sideways at my subconscious. (btw, is there an emoticon for that?)

Something of the same implicit assumptions are present in my feelings about using a wheel-chair. In June I am travelling overseas. Last time I did this it was only an 8 hour flight, (this time it is one 8 hour leg and one 15 hour leg each way) but even so it was so exhausting that I could barely walk off the plane at the other end. It was a horrible, horrible experience. Mostly because of the reaction of my parents. There is no nice way to write this. They were ashamed that I could barely use my legs. In their defence, this was quite early in my illness, and at that point I didn't realise that people with cfs might lose the use of their legs. My parents felt that I wasn't trying hard enough. Long and painful story short, in June I will use a wheel-chair to get through the airport. I probably can walk the distances involved. But standing in a customs queue - potentially for hours - is utterly out of the question. But I am feeling enormous guilt and shame over the idea of using a wheel-chair when I don't need to (ie I am not paralysed), despite the fact I do need to. I have only just started truly self-identifying as disabled. Which is ludicrous, because I've been disabled for years.

Obviously I've internalised a great deal of my parents' shit about "pulling oneself up by one's boot-straps" and "mind over matter." With a nice big helping of crap about what is and isn't a 'real' disability. [I want to emphasise that in people not myself, cfs and all sorts of other invisible disabilities are both consciously and unconsciously very much counted as 'real disabilities' - all this junk seems to only apply to me.]

This sounds unfair to my parents. In fact, they do more in terms of accommodations than many. (My father is a doctor, and accommodations for his patients have always been a priority, and they truly think about what patients need, not just doing the bare minimum of what is required.) But here is where hierarchies of disability come in. I have all my limbs, look healthy, can mostly control my limbs. When I can't, it feels as if they feel I'm putting it on, or not trying hard enough. They have come so very far in four years. But it is still as if I'm not a 'real' disabled person. They make me feel this at the same time as buying me walking sticks and purposefully choosing the most colourful, 'youngest' looking one for me. Honestly, I'm not sure how they're accomplishing these mental gymnastics.

I do also wonder if there is some paternalism and/or othering going on here. People with disabilities are patients, people with disabilities are over there. We'll be very nice to them, and do everything we can to help them, but they are not us. Just to complicate matters is the intense awareness that my parents have that we are in a 'system of limited good' with regard to disability in this country. I have never received the disability pension, because when my GP suggested it, my parents said "There's not enough to go around as it is, we're lucky enough to have the means to support you, that money needs to go to people without that support." And there's a bit of that with me and the wheelchair use. I think "Am I ruining it for people who have no other options if people see a seemingly 'able-bodied' person using a chair? Will it just increase misconceptions about PWD??!! Argh!"

It would seem I am doing those extreme mental gymnastics myself, simultaneously recognising that I am disabled, but feeling guilt over using systems and tools for people with disabilities. It is exhausting, and I don't like what it says about my subconscious beliefs about disability.

Halfway through Good Friday. One service this afternoon, but I have no responsibilities for that one. Reeeaaally missing naps today.

It is such an odd day, so emotionally draining, but with this incomplete quality to it. (Which is quite conscious and deliberate in our tradition, you don't have a blessing at the 'end' of a service from Thursday right through to the first Mass on Easter morning, because it is one long service, that stretches the whole three days.) The feeling of the day is of a held breath, or perhaps of the moment just before the sun breaks over the horizon at dawn.

I thought I'd post my Good Friday sermon for anyone who is interested:

 

( Good Friday Sermon )
This is the first time I've made one of my sermons available on the web, I feel vulnerable even giving people copies when they've asked for them. But I have to be brave sooner or later!

Holy Week and I am mostly posting now in an attempt to distract myself from how much pain I'm in and how all I want to do is crawl into bed and refuse to come out. This post has changed its mind several times about what it is. First it was going to be about theologies of illness and disability, but basically that just made me keep crying, so that will have to wait till I'm feeling better. Next it was going to be about preaching on Good Friday. Now I think it's about bodies and Holy Week.

Holy Week is just this gruelling marathon, even for temporarily-able clergy. From our first service last Sunday to our last service on Easter Sunday there were 19 services that my boss and I were doing, or had to be at. The theory is that everything else just gets put aside, but of course, life doesn't generally work like that. Other things keep cropping up, and some of them aren't listening to me saying "Look, can I deal with that after Easter?"

Like, for instance, my body. It's Holy Week, I could really use a break here. I'm in so much pain, and my pain-killers seem to be having no effect. Next week I'll start with a new doctor, and see if we can't actually control some of the worst of the pain. But this week, I'll just have to manage. And avoid screaming with pain during actual services.

Then I had this really interesting experience. Tomorrow is Maundy Thursday, in which we remember the Last Supper. During that meal Jesus washed his friends' feet. In our services, we wash one another's feet. In my last parish, it was just anyone at that service who felt moved at the time who put out their feet for the washing. Here, we ask people in advance.

I expected people to be perhaps a trifle reluctant but am surprised to have encountered so many out and out "No, never, not me." Certainly, some people are uncomfortable with being touched by others, for most of these people I'm confident it is not that sort of dynamic going on here.

Yes, the experience of foot-washing is intensely intimate, both as a washee and as a washer. There is deep vulnerability involved, as a washee a real entrusting oneself to another, and as a washer a deep respect for the trust placed in us.  But here's the thing, as church, vulnerability is what we are about. We should be pushing ourselves beyond our comfort zone in trusting others. (There are immense individual differences in what this will mean, I recognise that for some, leaving the house, going to a building with a group of strangers and negotiating the accessibility issues they find there is a huge, huge demonstration of trust and vulnerability)

I guess I'm also wondering how much our view of our body comes into play here to. Many of the feet I've washed wouldn't be displayed in a magazine, sure. But we believe that we are creations of God. We say "This is the day that the Lord has made, let us be glad and rejoice in it!" I guess it saddens me that we don't seem able to say "This is the body that the Lord has made, I will rejoice and be glad in it!"

Usually I'm all about consensus decision-making, inviting and encouraging diverse points of view on subjects, phrasing what I say as my own opinion, not presuming that this will be the experience of others.

But recently I've noticed the emergence of Authoritative Voice on a few occasions. Authoritative Voice phrases things in less conditional ways than I usually speak. It posits things as a matter of fact, rather than my subjective opinion. It is quite stern, and while not boastful about academic accomplishment, makes it quite clear that it knows about that of which it speaks. It tends not to encourage actual debate, but would be happy to answer questions of clarification. Authoritative Voice is right, by implication it possibly says that if you disagree, you are wrong. This is among the reasons that I'm frankly a little uncomfortable with Authoritative Voice, and wonder if it really ought to be coming out of my mouth.

Upon analysis, it appears that I use it at times when progressive views would be seen as "just her opinion" rather than having objective validity (which all the listeners presume to exist, and which reactionary conservatives around here are always happy to claim their opinion has.)
Examples include:

* speaking about queer kids in the community - saying that there ARE queer kids in the community - at least 10% of kids in the area, who may each feel alone, scared and isolated. Saying that these should be some of the most important people in the world to us, since they are unquestionably some of the people closest to God's heart.

*When someone was dismissing as pantheism the environmental theologies that someone else was talking about with joy.  I said in fact, no, this is not a valid critique, environmental theologies often include elements of panENtheism - which is totally different. Later, I felt really bad about shutting down debate in this way, but know that opponents in this debate don't hesitate to do the same to me (I've been called "not a Christian" to my face by one of my professional peers. Which, yeah, if you're ever looking for a conversation-stopper among clergy, that's a doozy right there.) And the person I shut down was seemingly privileged (whilst being aware that there may be invisible areas of disadvantage of which I am not aware) - white, middle-class, middle-aged male - who had no problem blithely romping over the views of this other person (female) and indeed others (women, PWD, the young) in the group.

I think I use Authoritative Voice when I think that expressing views in such a way as to allow other points of view would be seen as being uncertain somehow, and that the progressive view would thus not seem to have as much worth as the conservative view. Here's the thing, the other side in these debates doesn't give their authoritative voice a second thought - in fact, that is always how they speak. Can I afford not to speak in the same way?

What do you Dream-width-ers reckon?

In seeking to have the voices of the marginalised heard and a progressive social agenda furthered is it ever ok to engage in debate (or, indeed, to shut it down) using the methods of the kyriarchy?

Sooo much has gone on since I last posted that I don't know what to post about.

( Cut for a somewhat disconnected ramble cfs-induced ramble about my life at the moment. )

So, that's me at the moment - and Easter is bearing down on me like a freight train of poor preparation, liturgies I wouldn't choose and sleep-deprivation!

I feel I should say before I begin that don't really know what this post is. Being an extrovert (and thus, I think best by talking) it might be an attempt to work things out for myself or it might be merely a cathartic rant. Doubtless part of the angstiness is stemming from once again trying to be at peace with the way in which I'm going to be single my whole life. I wonder when I'll finally manage this peace, I thought I'd been through this already and was ok with it. Apparently no.

I've been very interested to read a few people's musings on friends, and on the ways they make friends/ plan on making friends in new places.

It crystalises for me something I've known for a long time but kept trying to ignore. I am very, very lonely here. Lonely in a way I've never encountered before, and I feel powerless to start to overcome it. There are all sorts of factors involved in this loneliness: the isolating effect of cfs, the nature of my job, and being moved to a very cliquey rural town. It is also probably compounded by the life-stages many of my already existing friends find themselves at: in committed relationships, with new children, or in the midst of frenetic social times. Which is wonderful, and if things were different that would be me too.

One of my colleagues was recently asked by our Big Boss "Is she making friends?" in a way that obviously expected the answer yes. My colleague, I think, may have looked at him blankly for a few moments. Running through her head was "You moved her to an insular town, hours away from everyone she holds dear, she uses all her energy for work, she can't be friends with people she meets through work, but as previously mentioned, she has no energy for ANYTHING else." I think she may have actually said "It is a hard town to make friends in."  Of course, he has never bothered to ask me the question.

I try to make the effort to call family and friends, or write to them, but often when I am home I am slumped in exhaustion on the couch, trying to muster the energy to perform tasks of basic self-care (cooking, cleaning, laundry) or to do more work.

I've worked out that the only people I see regularly outside of work are my spiritual director and my yoga instructor. Lovely folk and deeply caring, but NOT to be confused with friends! Oh, and shop-assistants, who tend to see me in my work-role, and who relate to me in that caring role way. So even if I don't see work people at the supermarket, the check-out can be quite draining!

This is among the reasons that I frequently thank God for the internet, it really is helping me to feel as if I am in touch with friends, even if I haven't the energy to chat to them. And I am revelling in the process of meeting new people that has come about through this wonderful Dream-width thingammy.

But in terms of strategies to acquire local friends, I really don't see there are any. The most important thing is to be self-aware, and watch for danger signs that loneliness is leading me to inappropriateness. On the plus-side, I think I am doing an adequate job of this watchfulness, and am building up things like this blog to act as pressure-valves.

I think I'm fighting off a cold. My family has a children's picture book called "I don't feel well" that is read to the person who is not feeling well. Bear in mind the youngest in the family (apart from "furry grand-children" cats and a ferret) just turned 21! My mum tracked down copies via ebay for all of us, so now one can follow along as it is read over the phone. It is enormously comforting in a peculiar way and makes me reflect on the value of tradition, communal as well as just family ones.
Had a conversation (via typing) with one of my very best friends ... who was very surprised to learn people die from cfs. I've been sick 4 1/2 years now, and it seems strange to be having this conversation, especially since one of my biggest fears during the last 12 months has been the catch 22 of if I really need to be admitted to hospital I will be (by definition) too ill to get myself there, and probably too ill to be able to communicate this to anyone and worrying at what point I should pre-emptively make that call. Just goes to show how little is generally known about what having cfs really means to a person. As I was saying to someone today, it says a lot about how the unknown nature of the illness affects me that I cried tears of relief on reading the article that suggested that cfs might be a retrovirus (if this doesn't mean much to you - the reason AIDS is so hard to treat is because it is a retrovirus.) At this stage I wouldn't have the first qualm about offering myself as a test subject in trials of antiretrovirals, unfortunately I'm too far away from major research centres.
But there is some light at the end of the tunnel for me at the moment, I see my family the day after tomorrow! I just can't wait!

I've been meaning to make this post for a while, and day off means yoga, anime and time for blogging :)
I also took photos, but can't seem to manage to upload them.

1. Cherry Tomatoes I grew myself (as seen in my icon picture) My poor tomato plant, when I'm not well enough to look after myself it certainly doesn't get any attention/water/seaweed drink/worm tea. And yet it just battles on, and then there are these amazing tomatoes, all different shapes and the most wonderful deep red. It feels like a real accomplishment, even though I've done very little in this whole business.

2. My cat. He is tabby, has a long tail and makes my life bearable. He very seldom deigns to sit on my lap or lie beside me on the bed, but when I'm very sick and really need it, he curls up beside me and things seem better, even if they really aren't.

3. Brave flowers. Opposite my car-port is a little strip of grass, in this strip of grass some flowers grow wild. The person who does the lawns evidently feels that flowers have no place in nice, neat grass, and mows the little strip of lawn straight over the top of them. And then, just days later, more flowers have managed to spring up. It is so beautiful. And being just opposite my car-port, these flowers cheer me up, just when I need it most, when I'm dragging myself off to work, or when I'm coming home so tired I can hardly stand.

4. Making lace. It has been far too long, but I'm preparing to start a big project, and I'm feeling quite excited. I'll be using all sorts of exciting threads that I've never used before, but the lace is pretty easy to do, so little stress on my tired little brain.

5. Looking like my Mother's Mother. I never knew my mother's mother, since she (and all the rest of my mother's family) had died by the time my mother was 14. We've always been conscious of never seeming quite right to my father's family (not enough sport, too clever, too few hetrosexual partners!) Therefore it was a wonderful moment when I saw a photo of my mother's mother and realised that my figure is exactly hers. So, recently I've been making choices like hair-cut, sunglasses and dresses to accentuate the resemblance. She was an amazing woman, an ear, nose and throat surgeon in the 1950s, when I imagine there would have been few other women in the field. She once set her OWN broken nose! I'm so proud to be her grand-daughter. And to look like her!