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

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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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Feeling funk-y

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An email to a legal eagle friend of mine regarding dinner tonight. Yes it’s another self indulgent no real detail post but its a good piece of writing and this is my blog after all!

subject: due disclaimers

Hi Mr Eagle

I’m sort of in the mood to write this rather than text. Perhaps in the writing I will in and of myself feel better. But I thought that i had better give you the option to back out of tonight.

It’s not health related at all but a whole lot of very minor and not so minor things are leaving me feeling flat and very humph as well as frustrated, from the personal to the beauracratic (” are you sure Nicol is REALLY your last name?”), from noise to pedestrian, from being too invisible, to too visible at the same time, from the individual to the collective, from wanting to be thanked for my generosity more in some cases to wanting to be anonymously kind in others, from wanting some people to ask me for help, to wanting others to quit taking advantage of me, from wanting to be out in the beautiful weather to wanting to curl up in a ball in the dark, from wanting stodgy rich food while simultaneously being a health nut.

It’s just one of those days and no it isn’t tired. I’m well rested and feeling ok considering. It’s just a funk and seeing you would no doubt help. But if the idea of me lamenting the dichotomous absurdities and frustrations of life is unappealing or even not saying anything on the topic I will understand, :-) Consider thyself warned and all disclaimers being now duly tendered in this case, in the matter of “Should “Mr Eagle and Joanna dine tonight?”, speak now or forever hold your piece :-)

love,
Joanna

Ps I do feel better having written this :-)
PPS Maybe I should stop reading books on finding happiness!

By the way, he said yes to dinner! How lucky am I?

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What will

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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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I could talk

So much I could say. So much I could post. Though of course not all of it I would post. I could and probably should post about the NDIS/disabilityCare thing and the problems with that label, not to mention any of the other funding or UN Convention on the RIghts of people with disability implications. Or I could talk about the sense of disconnect I fear between the expectations placed on the NDIS and what I fear the outcomes will be, especially in terms of the expectation of being participatory human members of society. Not to mention our own expectation of this.

I could talk about the trip to Melbourne; the changing vibe, the highs of interesting conversations about choice and image, perception and empowerment, of tram rides and train rides executed without fuss, or the extra of the seeking of permission, the lows of scheduling and missed opportunity, of mixed messages, of debates with taxi drivers yet again about the validity of the interstate taxi vouchers; (what is with it with this regular but random impression that no one with a disability travels, much less without an entourage of the strapping and the young).

I could talk about Seymour. Of awe over both people and the place. Of more interesting conversations. Of feeling both part and apart. Of movement, doing and watching. Of longing and yearning, beauty and sadness.

I could talk about the herald article about the sterilisation of disabled woman and self-directed care, assisted decision-making and full dependence. I could talk about the role of parents and the tensions there. I could talk about a housewarming party I went to a few weeks ago and a conversation I had with a woman doing research on the siblings of people living with disability and wondering what my brother would say.

I could talk about the experience I had at this college with them trying very hard not to exclude me from festivities but to also not drench my chair during a surprise water bombing.

I could talk about the books I am reading, expanding my thinking on questions of faith, doubt and also the future.  I could talk about the management of sad memories and sadness for relatives that I don’t know.

I could talk about feeling increasingly invisible and unimportant generally and feeling a wish to bunker down but have more fun. I could talk about my efforts to declutter and simplify. I could talk about technology, in its failing and succeeding. Depth not width.

I could talk about the fact I wanted to stop talking and thinking about “disability stuff”, but have realised anew that it is interwoven as part of my own fabric. In fact I could write about how so much of the thinking and feeling outlined above is interwoven and feeding into a whole that as they say is greater than the sum of the parts.

I could and might write about these things. Or I might just post this as an expression of the way things are.

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A cautionary tale aka: of Picolo, cake and dodos

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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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sorry

I’m sorry to anyone that’s been waiting for news or updates from me or coffee catch ups or blog posts.

January has been a tough month on a few fronts, including ill-health which has somewhat frustratingly set a slower pace than I’m used to. Sorry. I’m fine and I’ll be in touch soon.

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More writing ..again

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So, yet another piece of writing software becomes part of my choice to buy as part of Dad’s iTunes gift and yet I claim I want to de-clutter my life. But he did say to buy something very me; and rightly or wrongly, this feels very very me and something that is in fact very him too.

But writing does help and so I write. This bit perhaps to de-clutter my head if not my desk. I tried 750 words, but somehow that felt like competitive clutter, online clutter and another login and so I found myself stopping.

So Christmas is over and I’ve used the gift vouchers or am starting to. The iTunes voucher, Books for the Kindle, a dress some time ago, and my perfume by virtue of a gift voucher from my brother. The rest was food-y which was nice, although my stomach wasn’t really up to much this time unfortunately even on the day itself, in a pretty severe way.

So one of the books I choose was The 100 Thing Challenge: How I Got Rid of Almost Everything, Remade My Life, and Regained My Soul. 24 pages in, he is a very funny and self-deprecating author. So the book is fun, but so far I am still sitting here in what I consider to be a mess. I can’t help wondering how much flexibility I should allow for limited mobility etc. Time will tell I guess

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A quote that exemplifies my head at the moment

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From John Donne

No man is an Island, entire of itself;
Every man is part of the continent,a part of the main;
If a clod be washed away by the sea,
Europe is the less,as well as if a promontory were,
As well as if a manor of thy friends or of thine own were; Any man’s death diminishes me,because I am involved in Mankind;
And therefore never send to know for whom the bell tolls; It tolls for thee”

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A big moment yesterday Newtown station works

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An SMS I sent yesterday

“After waiting for 17 years for accessibility I’m waiting to board my first train to NEWTOWN train station”.

Yes after what seems a long slow build and a lot of behind the scenes work the station is operational.

I was quite emotional. I tried to engage the station staff at central station in the joy which wasn’t that apparent, but to no avail.

I weeped and giggled from central. I sheepishly explained to the sole occupant of the level bit of the carriage that I had waited a long time. She said they had done a good job. I noticed that very soon she will be pushing a pram and using the very lifts that I am lording.

I have done two single trips arriving at Newtown station. I have shared the lift with 3 mums with prams, 2 small children, one young man who is on crutches for 10 weeks and an older gentleman with walking sticks.

Clearly well needed

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