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Musings | The view from down here

Category: Musings

Just quietly

So while laid up I've been reading, thinking and researching. Whatever took my fancy really. Plus dealing with a couple of bits of people related drama

In preparation for resuming study next week I've been trying to build-in some routine and allow specific times for reading and writing especially which is good. Hopefully unlike when I first started studying I won't be alarmed by how much extra I suddenly had to do along with the disability and time wasting “very important stuff” that a teenager out of home for the first time has to deal with. Of course very little of that very important stuff was actually very important but that is very much the perspective of youth.

I'm trying to consciously read more. Speak less. Listen more. Solve less. Be quieter. I'm not finding this hard at all. In fact it is as if the peace that passes all understanding has landed. I'm leaning back into it and myself. I'm less exhausted in one sense because I'm not giving away so much. I'm calling stuff as I see it, if not aloud then consciously but silently

I have decided I don't like Sydney. Too busy and way too aggressive.

I'm learning to like myself I guess. Again, or for the first time at this new level I'm not sure which. Another stage of the getting of wisdom perhaps?

 

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on economy of various sorts

I’ve been reading and hibernating mostly. Just being quiet and trying to battle technical dramas of one sort or another.

I’m feeling more naturally able to be quiet and a bit smaller. Not in terms of stature but in terms of the footprint stuff. My own footprint and the extent to which I let other people’s footprints on me and never find out about it.. Not entirely of course. But certainly with strangers I’m better than I was. I’m remembering the need for boundaries, if not always remembering to apply them. As I said to someone yesterday I’m now remembering to include myself on my radar of people to care about the preference of. Even if i then don’t choose not to apply my preferences, as i often don’t, (preferring others needs to my own), I usually resent the sacrifice less because it felt more of a choice. Which I’m less likely to “automatically” repeat if the costs to me are too high or the return on investment is too low.

My quest for personal economy is heightened as well. Saying less is a beautiful thing. Not only wise in terms of social matters, but better resource management for me. I am learning to embrace my inner introvert, instead of fight her or merely tolerate her thanks to Quiet: The Power of Introverts in a World That Can’t Stop Talking. In summary I understand myself better. I now have a clearer idea about why loud random people and noise not only causes spasm but annoyance and almost a different sort of pain.

I’m still also on the minimalism track from a bit of a different angle this time. Among my reading on my iPad is also Walden. There’s a lot in there, but while I don’t fancy myself ever becoming a subsistence farmer with arguably only one or 2 sets of clothes, I do wonder how much money and more energy I could still save. I also wonder how extreme I would be ready to go.

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Quote from Facebook

I choose to live by choice, not by chance;
to make changes, not excuses;
to be motivated, not manipulated;
to be useful, not used;
to excel, not compete.
I choose self-esteem, not self pity.
I choose to listen to my inner voice, not the random opinion of others.

I’m learning this one in a deeper way at the moment and it’s working.

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Tuesday/Wednesday tiny; Maybe not such a dork these days

Tried to post this yesterday, but only just discovered it didn’t go

Maybe this insecurity is born out of being teased at school I’m not sure but I always get a jolt of pleasure when I notice strangers reading the same books as I’ve read, listening to music that I’m even unlikely to bring out at a dinner party or playing a game on iPad/iPhone that I’m embarrassed to admit that I love (to the extent that I usually reserve it for the bathroom).

While family and friends are generally a different matter; with strangers I’ve tended to hide my taste or lack of it in such things, considering myself somewhere between a renaissance woman, an old soul or just plain dorky.

So when in the last week or so I’ve noticed separate women, roughly matching my demographic reading a book I’m also reading, listening to music that I recognised as in my “might be dorky” collection and playing a game on an iPad ( and she looked like she was further ahead on it than me)I smiled broadly. Maybe I’m not so much of a dork these days

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What will

I was reading a series of blog postsfrom Beth on a 10 week read along she did of the Willpower Experiement. I haven’t read the book ( though it is on my wish list now). It seems like the book was written for me. It’s not that I always fail to follow through but personally driven, personally focused committments over multiple days is hard for me.

For example it was time for me to do my annual GTD tweaking. This time however, having fallen off the wagon almost entirely so think of it more as a decluttering detoxing rebuild of a very ill GTD system.

So this weekend officeworks and I became well acquainted and I have a beautiful office space; complete this time with a working tickler and reference filing thanks to a working filing cabinet which I have resisted to greater or lesser degrees in previous rollouts. One of my main rationalisations being that being computer savvy, I would of course scan every bill and other documument into a perfectly ordered system of virtual filing with full and consistent backup and redundancy!

Ha! And we now return you to your regularly scheduled program: reality. So I’ve started with the filing system and with my somewhat consistent efforts to purge the office here, my “girl den” as I’ve taken to calling it, is looking good, even a tad sparse.

It is now a beautiful space. It is clean and crisp. I even got a spontaneous “oh wow” from a visitor after it was done for the day. I was and am proud. I haven’t done the mind sweep David Allen suggests you start with because I have learnt that while it is neccessary to do that step and thoroughly I can get bogged down in it and not get beyond a project list that looks and feels unwieldy and unforgiving.

So today I tried sorting the bedside shelves which is where I want to store my shoes- in pairs ideally, fancy that and atop which I house my equally disorganised jewellery case. That was today’s project and it was an excavation in itself as we’ll as a high exposure to dust! But yes I got there.

So in one way, yes I did good. I continued decluttering and took on another bite sized activity while maintaining the clean and clear surfaces.

So the other side of my pride and going back to my original musings about willpower I havent really continued on with the project I started on only yesterday. Although what I did do today was great, I’m a little angry that I didn’t have the staying power to even do a two day project. I get excited when I finish a set of post-it notes rather than lose or de-sticky them through carelessness because right now it seems so unlike me to follow through or finish anything!

Leaning back and trying to be self-kind now, there are two things that stand out from the blog posts.

  • Choose one thing at first to develop will power for: decluttering, going to bed early, writing, drinking water and do a little bit each day. I guess this is among other things the idea that neither Rome nor our willpower were built in a day.
  • The second was a tip with I think very broad application; about time. Quoting the author of the blog now:

    “Studies show that most people, like Sonnet and I, “wrongly predict we will have much more free time in the future than we do today” (p. 94). What’s helping me is to find a way to get ever-closer to my goal of a decluttered house, even though I’m busy. For me, this means one clutter spot (sometimes a very small one!) per weekday. Even on extra-busy days, I can usually do that. And if I do miss a day, I just make sure I’m extra-motivated to pick up where I left off the next day.”.

So for me, being as realistic as I can about the time and resource available, I’m going to try and sort my intray for an hour into the right context lists and remember to whiten my teeth tomorrow night.

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A cautionary tale aka: of Picolo, cake and dodos

First off, this is a rant and a very long and personal rant. I’m sorry to my new readers. But it might mean I start posting more regularly :-) . That said

I am a woman with a personal history of faith in God dating back to my early teens and a background in the Christian Church from birth. I went through a brief but intense period where I was a bit more literal than I am now in my interpretation of the Bible and its teachings. I have had various periods of doubt and wilderness walking, more around the Church than God, though,  as the common denominator between the Church and me, and the all great “omni-everything” God has been given due responsibility and we have had many emotional “rounds in the ring”. I’ve been through rounds in the ring a range of things including over my disability and whether God would have me walking with two good arms this side of whatever the next life is. Our hard-fought for conclusion on that issue ended up being that God would give me strength to endure and; in the words of a hymn; “”Do every day, what I have to do”. I’m intentionally not evangelistic, believing each person has to find a path (plus the evangelists tend to scare me; see below.)

I’m fairly private about my faith. believing  as role models have before me in Mathew 6:1. In addition, my faith and theology have both been a bit unconventional and certainly well wrestled with so tougher (maybe) to encapsulate

As would seem logical, my disability has featured in my deliberations about faith, though it is far from the only factor that has impacted on my faith. However strangers who are Christians, have, at various points in my life, worn their religious convictions on their sleeves and sought to pray, loudly and uninvited that by their prayers (because mine are never enough?) the devil would leave my body, my “excess sin” would be removed and I would, in the middle of — insert main street here, get up and do cartwheels. Un ramped/uneven  Churches in my past have had mixed reactions when being asked about a ramp. They have either told me they don’t need access because they will pray for me and therefore I will just amble in, or they have built one, like a human rights issue!

With all this as long-winded background I invite the brave amongst you dear readers to review the following online discussion held today, two weeks after I had a batch of three such public healing “moments” in the space of 7 days. I’m reporting the first and “worst” of these to NNNNN and reproducing with minor edits and their permission here.

Me:You at your computer?

NNNNN: Yes

Me:Ok. How about I tell you the worst of the three healing events? I’ll tell you line by line to keep the flow going and will let you know when done.

NNNNN:Shoot!

Me: :-) Head or lung or back?

NNNNN:Any.

Me:Ok, remember last time I was there and got ready for a function….?

NNNNN:Yes.

Me:As it turned out the function was a lot of fuss over nothing and only went for an hour …

So I rolled up to town hall from circular quay…

NNNNN:Yup.

Me:And decided to sit at jet cafe outside by myself have a silent fume at the event and a coffee…

NNNNN:I remember Jet Cafe.

Me:I had my headphones in and was half way through my coffee when a woman (50 year old professional traveling solo) sat facing me at the next table

We smiled at each other a couple of times

Small talk as she ate ensued.

NNNNN:Then?

Me:Jobs

Traveling

Married/not married

Coffee and shopping in Melbourne

Disability access Sydney versus Melbourne

Etc

I happened to say “goodness knows” to something she said Jesus would know

NNNNN: mmmmmh

Me:My first red flag. We agreed we were both Christians and I explained that my faith helps me cope

She asked me how I came to a relationship with Jesus

I gave her my spiel

I asked her her story – safer to get her off the subject of me and keep her talking of her

She was born again at 24

Jesus had told her she was going to marry a pastor and pointed him out to her personally.

She has brought many people to Jesus including whilst being hospitalised in Europe with a dvt by Jesus just to bring the woman in the next bed to Jesus.

Me:All this time I keep saying god gives me the strength to live with the CP

NNNNN:Yes?

Me:She goes inside to ( I thought) pay but instead orders a round for us of coffee and cake

I had prepaid my first coffee

She sits opposite me

The waiters remove the other outside tables (packing up)

We eat the cake

She talks about Jesus and how many times she has seen great healings

You have never seen me eat cake so fast but my upbringing said I couldn’t leave though I made noises and moves to do so

NNNNN: Ahhhahh!

Me:She asks if she can pray for me

NNNNN:Ouch!

Me:I say thank you that’s kind and if she wants to add me to her private prayer list I would be humbled but I don’t believe in public prayer nor in the laying on of hands

NNNNN:Yes?

Me:I quote Matthew 6 ” do in secret” at her

NNNNN:Yes?

Me:No good

She wants to cast the devil out of me and restore my body and my faith.

Jesus is telling her to do it and do it now

NNNNN:Ouch!

Youch!

Me:So she bounds out of her seat stands next to me with her feet positioned so if I was to reverse I would’ve hurt her- though I don’t think that was her thinking.

So there are no other tables nearby now and I couldn’t go back or forward

NNNNN:You are trapped.

Me:And she had one hand on my “evil chair” and one on the front of my head

I ask her three times again not to

NNNNN:

And she’s not listening.

Me:I say it is unwelcome and cruel

She says its the devil resisting

I quote scripture.

She says the devil quoted scripture when Jesus was tempted. She was right of course he did.

So I decide to let her get on with it and not make a scene

Well…

NNNNN:Yes?

Me:She goes on and on and on for 25 minutes

NNNNN:Ow!

Me:Casting the devil out of my body

My head

Heart

Slapping me lightly on the back of the head

Telling god that I am scum in his sight because if I was forgiven I’d walk away from the cafe

You name it …. I got it …

NNNNN: :-(

Me:It went on and on and on

The worst version I have ever got.

Seriously.

NNNNN:I see.

Me:Meanwhile. My prayer was something like. God if you want to have me walking and with a normal arm I would be grateful but if not if you’re there please move this woman’s heart away from doing this.

NNNNN:At least just to move this woman away.

Me:God didn’t do either.

She finished her prayer. She believed god would work the miracle as she slept. Or I was a devil sent to test her. It was one or the other.

Left me her business card and walked away

NNNNN:Whew!

Me:And I was left shaking but not walking

NNNNN:Shaking indeed.

Me:God let us both down that night. It started to happen two other times that week. There was no sanctuary. I’m over it. I’m over being the means by which other people get to feel better and get their heavenly brownie points.

Scared you off?

NNNNN:No. Just taking it all in.

I’m just sorry you have had to endure these unpleasant experiences.

Me:I think my faith is officially gone the way of the dodo. It happens too often and I don’t see a lot of the God I believe/d in in practise.

NNNNN:God will not intervene?

Me:I don’t expect an interventionist god. I want a sense he can and will protect me and work on people’s hearts.

NNNNN:God doesn’t act in the same way that woman wants to.

Me:What I’m left with is either he’s passive or he doesn’t give a s@@t about me.

NNNNN:An uncaring God? Could be that there are too many who don’t let God care through them? Could there not be a few, though, who do?

Me:I don’t know. Honestly. But right now I need to go to a meeting.

Love

Joanna

NNNNN:OK. Thanks for sharing the story.  May my hugs go with you. Love. NNNNN

To a selection of my Christian friends after my third such moment I sent:

Why do all the religious cocoos come out at once and try me for size? Just got caught briefly by another one. My third in a week or so. Over feeling like I’m up for everybody else to earn their brownie points just because I sit. ;-(“

The silence from some of those friends, some of whom I’ve known for over 20 years and through other really black holes was deafening. One such trusted friend quipped later (admittedly without the above event background, but with I thought a good knowledge of the value I placed on my faith) that my doubts were because the Pope had resigned.

Although I get that these stupid healing actions are the actions of some fallible Christians, not God (and I’ve had other good Christians, like NNNNN who are also fallible members of the broader Church try and help me process this since), I do blame God for this one. For not protecting me . For making me go through this largely alone. AGAIN . For not shutting these people up. For not sending a stone tablet down as an appendix to the Bible telling folks that physical illness and disability are not evil. (There would be other stone tablets of course).

I can’t shake this one. It has been devastating. Usually my admission of faith and my explaining that Jesus helps me cope are enough to prevent these full-blown attacks, not this time.

It leaves me exhausted and lonely (my non Christian friends don’t get the grief either, almost “what took you so long”), sad and feeling like I will always be suspicious of people that say they love Jesus, whether I ever believe again or not. I fear I’ve wasted 23 years of life in the boxing ring of my faith and while I know that there have been bigger things that God’s done well (apparently), my relationship with God through faith in the Christ has been my link into the mystery of it all..

I just don’t know where to go with it now, but thanks for listening

 

 

 

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But something I did like

Was Meg Wolfe‘s The Minimalist Woman and the follow up The Minimalist Woman’s Guide to Having it All. Buying the latter especially in light of the whole minimalism philosophy and my own, did indeed feel a little counter intuitive! But both books were each useful.

I seem to be on a gentle quest of self-development. I dare not speak too loudly of it as experience has taught me that if I start striving after self-development, I crash and burn.

So mini steps (micro rolls) are working for me.

  • I’m getting a little better at boundaries. Long long way to go here, but I’m not turning myself inside out to fit other’s schedules or more likely lack of them.
  • I’ve bought yoghurt, nuts and protein drinks and am eating them as snacks. This increase in fibre and protein has had an impact, some of it a little inconvenient.
  • I’m using things up before I toss them.
  • So far I’d decided I’m going to use up my other perfumes before I replace my favourite one.
  • Despite the stack, I’m trying to read a book or two to the end before starting a new one.
  • every time I leave this room I try and toss a piece of rubbish.

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Friday fashion: the first question

Recently, I volunteered to be part of a media or research project on disability and fashion. The co-ordination was done by a Dr Jill Bamforth a social research academic from Melbourne with an eye for fashion and an awareness that there must be challenges finding clothes that work on any number of levels for people with disabilities. She was also aware that there would be an unmet market that wasn’t necessarily being served currently.

After at least two brief phone calls that had technically or timing issues in which we established among other things, that; I didn’t like centre-back zips, can’t wear pantyhose, but can do thigh highs but don’t like the limited range (even now when there is a decent range in pantyhose as there has been recently in Australia). She then sent me 11 insightful questions, inviting me to answer without the pressure to answer them all. After that was an equally insightful hour-long phone call.

As with most well-written surveys on topics you have at least a passing interest in, the process of thinking that went into the preparation of my answers was fascinating.

Here was the first Q and A

1. You say (as others do) that it is important to dress in a professional way in order to be taken seriously at work. What does this kind of dressing entail – a suit/make up/ heels/hair cuts and colour, for instance?

How long have you got…. It involves all of those things above and balancing them out for an overall effect, based not only on the event you are planning for and the impact you want to make (same for everyone I guess) but how physically you are feeling (energy) and what parts of your body are working and what sort of movement you are anticipating — transfers etc.

For example I have two pairs of very different work shoes, that from the top(the way most people will see my feet) look very similar. This is deliberate. However, if I wear the higher heels (which are more comfy on my footplate) and my foot goes into spasm, my ankle gets twisted and it becomes a painful and visual distraction tht can last hours.

In addition as a wheelchair user I am viewed as sitting even when I’m moving which changes the parts of my outfits and body that are visually apparent.My breasts and my shins are more visible than my waist or whether I’m a pear or apple. So traditional fashion advice or mannequins are only so useful.

Also the wheelchair in one way is a fashion accessory and frames me so I dress to either not clash with it, or to complement it. Trying to igbnore it has not worked in the past. Keep in mind though that you want to be distinguishable from the chair at all times.

In the more traditional version of your question, yes all these things you mention contribute. I always tend to up dress because I get judged already on the fact I sit. I don’t wear a tracksuit at all except in bed. I always wear foundation. It might be vanity but the logic is to come over as a grown up, let alone a professional. I’m in my 30’s.

She was interested in the wheelchair as accessory bit, which I might go into on another occasion.

 

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Late to this too

I’m not known as a trend setter. I tried as a younger woman and as a teen and gave up pretty quickly and became a “classic” dresser which, when I was younger, looked a little “old” perhaps, but now I think it works (I hope).

All this by way of introduction that just as the cold season that I have dreaded abates and we are all wandering around in spring wear I manage to, having bravely avoided it all season, come down with a head cold as well as my persistent cough. I think I’m on the mend though. I just found it amusing that the curse continues and crosses fields of endeavour!

At least its sunny.

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Rubbing the tummy of the person with disability

This won’t be much of a post given how much I could say.

I was out with a good girlfriend musician who after a child-bearing hiatus is thinking of going back to performance. We talked a little of fame after going to Adriano Zumbo’s bakery and talking to the man himself who has been on tv here in recent years. My girlfriend went all starstruck and girly which was lovely to see. One of the topics we talked of was being on public display, something I know a bit about.

One of the things I have noticed again of late is the fact that I seem to be or feel I need to be always ready to be on public display. It’s not fame or even notoriety for anything more notable than I get around in a wheelchair.

The basis for the attention ranges from nosiness such as these comments to me in the last week from grownup meant I met for the first time on the train system.

  • “How does the chair work?”
  • When do you charge it?
  • ” I think you’re rear tyre is falling off.” (it wasn’t and no he wasn’t trying to be helpful)
  • “you need a pouch on the side of the chair like this (gestures with hands)”
  • “Can you sleep in a normal umm bed?”

It goes from the benign to the ridiculous. From nosy (above) to rude and curious or companionable (“I have a friend/sister/third cousin 6 times removed who broke her legs, so I know what its like”, “Do you know a guy named Bill (since you both are like that)?)

 

I feel I have a responsibility to be the most generous positive version of myself I can be. For all sorts of reasons. One of these reasons is the sense that I want to give the public especially children a positive experience of disability, if I am the first part of their education in that area. Sometimes that onus gets a wee bit too heavy, but it’s a hard one to shake.

Children of a particular height/age can be very funny; trying to work out how I’m moving myself, or why my “pram” is so different or why I’m such a big baby. I usually try to smile and say hello if I’m close enough. I do try hard not to laugh too hard when the child is staring so hard they walk into a wall (on more than occasion). I’m a little impressed when a restless or upset child can be suddenly quieted merely by being dumbfounded at the sight of me rolling about doing my business.

The attention is by no means constant; at least the comments and the wish to stroke my hair or pat me aren’t. The readiness must be. Especially when I don’t have a normal looking person with me it seems.

 

By the way, as someone who doesn’t like macaroons the one’s at Adriano’s were sublime. Go there! There’s even a ramp!

 

 

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