Disability

The care of keeping love

My Mother, My Daughter – The Rumpus.net.

I am weeping for this woman, this magic and wonderful woman who tried so hard, who deserved so much better.

I am weeping for the mother who tried so hard to bring what light into her daughter’s life she could, who also deserved better than the hand cruelly dealt.

I am weeping for for all of the children who become parents too soon, and for the anguish of the parents who cannot change this malign destiny who have to surrender to the care of their children in a world that provides nothing else.

I am weeping for a dearly loved friend who knew a life similar to this, hiding it in an abrupt and brusque manner tt times thathid the aching pain and tenderness inside, and for the gratitude that she stuck with me, too blind to see the hidden pain of her world, as tormented by my own demons they became magnified to blind me. To this day, I would give anything to go back in time and tell her then what I try to tell her now ow much she means to me, how much I value her, how damn WONDERFUL she is.

I am weeping for another friend who has managed to go through this with such dignity and grace , she provides inspiration to her children, and what help they must give they do as part of the natural love and care within a family – and i  am in awe of that, and try so hard to emulate it. I do not know how she manages to smile so warmly when I call on her – but oh, she inspires me with that smile.

And I am weeping for the feart hat my children know too much of this due to my pain and disability. Sometimes I see the little ones, faces pinched with fear, hovering asking with such adult concern if I need medication, trying to support my tall frame if I am in pain and moving to rest. The bigger ones who mother me, and care for me matter of factly – but who lost many years of their adolescence to my increasing pain and disability. For The Bloke who loves me and silently cares for me in practical ways, who never questions my need to rest, collapse. Who rescues me and gets my medications and tells me it is all ok, who loves me and makes sure my life works, supports me in my manic and consuming need to independently work and prove I am still her, I still exist as something more than the disability, more than Evil Back.

This weekend I have struggled with medication changes, and for a few days I faded and was diminished, and their gentle care and nurturing, their determination to be cheerful and nurturing, and their unwavering support – oh gods, let me  be worthy!

Want to be inspired?

Sue Austin: Deep sea diving … in a wheelchair | Video on TED.com.

So, here is a positive rebuttal to my own post. Oddly enough, I saw this before buying my electric wheelchair, and it was a direct contributor to me stopping being reluctant to taking that step. It did not, as the post on the matter has stated, resolve my doubts completely – but it should be the voice I listen to.

And Jodie’s voice too. Her comments to that post were both inspiring and comforting. Everything you would wish from a true friend – and a long term source of inspiration. When my disability gets me down, or my doubts swamp me, WWJS (what would Jodie say) is a conversation with myself that gets me through. (If the real thing is unavailable, or I do not wish to burden her. I don’t think I have ever told her how grateful I am for her – she is my mentor, my disability expert, an endless inspiration, and a great source of fun. She and I share a great deal of the same interests and ways of thinking. I am lucky to have her, and she is one of the few people that I feel completely myself with. Thank you Jodie. I can only give in return loyal friendship and deep admiration – and occasional jam;)

It’s been a while

I don’t know if anyone reads this blog you know. I make such a halfhearted effort to post – yet I am prolific on Google Plus, which becomes prolific on Tumblr and Twitter by default, as one feed morphs into many. If Google releases an API that allowed me, as once I was able to do, to post directly here and thence outwardly I would be so much happier. But here it is.

And perhaps I do so much writing at work, that at the end of any day I may have posted some comments on links found on G+, written in my Journal (DayOne has proven to be a godsend cross platform app), and spoken to so many people that my meandering has no need for a further outlet – indeed, I am unable to consider it. And yet I have many thoughts and ideas that are deeper than the brief comment, the 144 character remark, the noting briefly of the day’s events. This is what the blog exists for.

I guess I am always tired, too – the spirit is willing but the flesh is struggling day to day. And there has been much to process emotionally lately. So I have decided that it may be about time, (yes, the title of the blog is actually a pun that is also deliberately targeting these things), time to address such big things.

Where to start? Perhaps the King of Hearts has a point about starting at the beginning, and going on until you mean to stop, and then stopping. But beginnings are not always clear cut. For this concerns my disability, and happy anniversary indeed to you, car accident, 8 years ago. 8 years ago March 11 my spine started to morph into Evil Back, my bitterest of enemies and strongest of teachers. But I do not need to start quite that far back.

So, my birthday. 46 and aging rapidly – for being female and wishing to still feel young in body as in mind, 46 is an odd transition. I have these beautiful young women, my daughters, to reflect how hopeless that aspiration is. And I resent that not. I do resent the mirror, however. And the weight that wants to lurk in formerly untroubled places – oh belly! Oh hips! How ample thou art! And exercise, of course, basically impossible, beyond merely keeping what works working. So diet it is, but diets for someone who has struggled with eating disorders in the past is a bit fraught. And medication plays a trump wildcard on there. Oh blast and bother, can the scales not sympathetically just LIE occasionally? No??

That’s two pieces. Disability behind both of them to more or lesser extents, merely being flavoring in the background, or adding a more solid foundation for the feelings of sadness and inadequacy. Though I think those labels are a tad simplistic, and it is more complex than that. I like being more mature as a person, and love where my life is at creatively and professionally, as a mother and as a friend and partner. Disability is so intrinsic to who I am now that is it is there in everything, no matter how hard one tries to avoid it. Yes, I am more than my disability, yet I am unmistakably disabled, shaped and strengthened and limited by it. Sometimes I find myself dreaming of past events, or even remembering the past – and in my dreams I am still disabled, in my memories I find myself slightly shocked that once I walked and ran and rode and was without this pain, this constant insistent companion.

So other things, other things I have inferred. Well, meet my new companion, the as yet unnamed vehicle: 20130310-170817.jpg – an electric wheelchair. It tilts, allowing me to adjust my position during the day to an almost full recline, so I can hopefully do more. I can catch buses again, and hurtle round, and generally do things more independently than even the scooter allowed for. All with less of an impact or issue, as it fits in more places, and has a tighter turning circle. It has memory foam cushioning, which is incredibly useful when one sits so much. It has changed and liberated my life.

So why do I feel so oddly guilty for using it? Like I am not quite disabled enough? A normal wheelchair is damned hard work, and I work on the side of a hill, and pushing it aggravates Evil Back something fierce, as he is a spiteful sod. Sure, I am sitting in bed for the second day after pushing myself too hard, now even getting to the toilet is a long and painful process while Evil Back decides to be ascendant until rested into a more placated mood. But I CAN walk after all.

Ok, it’s jolly painful on even a good day, and as the day wears on, the letterbox is a world away and too far to manage even with the walking stick and all the time in that unlikely world. I mean, in that world I can lie down for a day after even the mildest walk to this letterbox – or on the very very best times, to the corner and back, but always with the stick, and a long long time to slowly accomplish it. But that’s not much to live a life with, a small world boundary, you see, and the chair is designed to prevent Evil Back from getting so cranky, malign, and vengeful. It’s allowing me to do so much with fewer consequences.

And yet I have had odd looks and snarky comments from people about it, I find myself having to defend this liberation machine, as if one must pass some sort of strict approval process to be worthy of being deemed disabled enough. Oh well. I must learn to move on from that.

And there’s the last bit to process. It’s MRI time again. Claustrophobics like me will all be shuddering at the idea. And why is it time, well, evaluation and keeping an eye on what the cranky old EB is up to is useful obviously. But also because there is fear my spine is collapsing more on its damaged side. That one day I will move and then not be able to move again, that what mobility I have will be gone. Sometimes I think that is a consummation greatly to be desired, as that could mean no pain. And yet even more issues arise with paraplegia. The body, as I have found, dislikes inactivity, and is designed to move by evolution, and sitting constantly has some very nasty issues that I do faithful physio exercises to try and relieve.

But no pain. Is that a price I am willing to pay? My family would be overjoyed to see me out of pain, and losing the medications would be an additional celebration here. But then, how badly damaged would I be, how much care needed, how restricted would I be, how much more of my precious hard fought for independence would i lose?

So life gets big. I guess it always does. But to lose more of myself, to diminish further would be to lose independence, I have realised, not movement. It is th e unknown that weighs on me, the fear of becoming a burden to those I love, of being even less than I am now. That becalmed increasingly intolerable as a thought, so I try to just revel on what freedoms, what movement, what mobility I have, with or without devices. Of course, I must find a suitable name for my chariot of freedom, to truly celebrate what it gives me first.

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The rules of engagement – sexuality

The 2013 Guidelines for Coming Out.

So, Jodie Foster came out. Or didn’t. It seems there is some idea of what coming out should look like, some wording that is necessary to meet a standard. Odd, the notoriously private Ms Foster, who made a speech that included a yearning plea for privacy’s necessity, is chided for not beetling this standard.

Who sets this standard? Who decides? Why must sexuality, coming out, or any related issue conform to rules? Consenting adults make choices. Healthy relationships come in so many forms.

And by healthy, I do not mean sick, controlling, violent power plays of rape and force. I do know people who are into BDSM, and in that scene, the concept of consenting adults is vital to it being conducted. It does not always succeed, but the intention is there, and that is worthy of respecting, again, human sexuality is complex. But when force is used on people without consent, or coercion, bullying, blackmail – all the vile variations that end up with someone sick their stomach in fear and or revulsion doing what they would not choose to do – then that is a vileness that is to be purged from any healthy society. And yes, I know wherein I speak on that, too:(

I have loved people. Their gender has changed depending on the person. I do not claim to be anything but myself. I do not think of myself as anything such as gay or straight or bi. Sexuality is too fluid to me; to me, it has always been about the mind. I found (after some erroneous attempts to be like other people), that I could not enjoy partners whose mind I did not respect. That I felt almost repulsed by people who I did not feel a warm connection to. That did not mean I had to be in love, but that I felt a connection to them. This seems to me to be normal. The shape that mind, that person came in, was thus irrelevant. People have such different shapes after all – tall, short, thin, round, male, female…

I also found I could have sexual relations with friends, a warm loving connection that required nothing more. I also found that very few others could experience that without complication, so I learned not to pursue that side of myself. We are, after all, a society with some strange attitudes to sexuality. Restrictions and rules that often have zero validity, or some that do but for the wrong reasons, unnecessary with better understanding and healthier outlooks. But that is what it is, and one must function responsibly to survive comfortably. I stand by my code of consenting adults, and do no harm. I have not always succeeded with the latter, but cannot imagine doing other than the former. However, I probably (due to circumstances of upbringing) regarded myself as adult long before I technically was. Je ne regrete rien – probably spelt wrong, French lessons being, like so much else, a very, very long time ago:)

While i make the point that attraction resides in the person, I can add that bodies can be broken or different, and still be sexual and attractive. Disabled people have needs, and we, as a society, are seemingly terrified of that. I have had disabled partners because of their gorgeous minds – their bodies became attractive in my eyes accordingly. I am disabled, and still have a sexuality to my nature. We who are disabled are not dead, after all.

I have a daughter who came out in the expected fashion. She did not angst about it, as she was aware neither her father or I would be concerned. I did, however, point out that her siblings had not felt the need to inform me, and I would welcome any partner she chose to introduce me to if they were good to and for her (sorry, abuse may kids, your form fails to matter, you are persona non grata). She laughed and said we gave her nothing for therapy;) but she knows me enough to understand, I was not rejected her announcement, just sad that the difference was needed to be commented on. I wouldn’t blink if one of my offspring bought home a same sex partner without the announcement, as long as they were making my child happy.

And that, after all, is the point. Life is a sweet, rapid blip. One fails to know how rapid as a teenager, when time can drag so heavily. But oh, how it speeds as one gets older, and every cliche about feeling young despite one’s body comes true. And here we are again, despite one’s body, feeling things. There it is. That’s what love is. We fall in love with unsuitable people, on spite of ourselves. We are attracted to the wrong people, in spite of ourselves. The heart and body (really the mind and body) will feel what they feel, for complex hormonal, sociological, genetic, historical, and chemical reasons. But I wish we could acknowledge that, teach healthy self respect for ourselves and each other early on, so that one’s sexuality is merely an aspect of oneself like hair colour (and for me, that changes in shades of red for decades now;) ). That one does not need to fear bullying for coming out, as why would one need to come out when normality is healthy respect for all the glorious shades of human sexuality, of consenting adults in healthy relationships?

By the way, let me end on this note. Oh, Ms Foster. I have so had the biggest crush on you since Contact. You fought for that project, you understood it, you knew Sagan’s work. What is not to crush on? An amazing woman with a sharp mind. Fiercely loyal, intellectual. Sigh. Yep. Crush inevitable.

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Hello body, time to well, not kiss, but definitely make up.

English: Illustration of the pain pathway in R...

English: Illustration of the pain pathway in René Descartes’ Traite de l’homme (Treatise of Man) 1664. The long fiber running from the foot to the cavity in the head is pulled by the heat and releases a fluid that makes the muscles contract. (Photo credit: Wikipedia)

I read this story: “I don’t have the stomach for worrying about my body anymore” and it struck a nerve.

I look in the mirror and I am nearly 46. I worry about the extra few kilos I have gained recently – weight maintenance is so much harder when one is disabled and have chronic pain. Hopping on a bike is out of the question, and the motorised scooter makes my life so much easier but doesn’t exactly require anything but the flick of a finger – scarcely taxing. So I am trying to walk a short distance each day, for I can, albeit for those short distances before the pain kicks in – I have movement but such agonizing pain as my mobility impairment. Hydro is great, and am trying to get back into it with regularity now that summer is in, and teaching is relaxed for the year.

But the reality is I am also at the age of menopause, and the weight goes different places. I have had ten pregnancies, only five to surviving term, and that has played some in regretted but undeniable havoc with my body, as has the various medications that keep me from howling in agony (oh, my poor teeth, how long will I keep what is left of you?). I am aging too, and the body is not young any more, regeneration slows, decay, all those things start their subtle indicators.

But this body has tried it’s best to sustain life, even carrying dead babies longer than it needed, unwilling to surrender them (a fact I once reviled it for). It has nurtured and sustained five magic babies even after birthing them, feeding them and giving them as good a start as I cold mange, and even struggling through a hellish start with the last one (emergency, life threatening c section that nearly had myself and my amazing boy die, then he was in NICU, and needed me in every four hrs to establish feeding, but as the hospital had no beds, I struggled back and forth exhausted, refusing pain relief so as not contaminate the milk, while trying to be there for my four other children – oh brave body to manage me through that time of the shattered, frightened zombie like life).

It struggles through the pain to perform what I demand of it, it is pushed at times to the limit, so determined and stubborn, often foolishly so, am I to try to be as normal and functioning as possible. It allows me to quilt, to be creative, no matter how much I have hated it for not being pretty enough, musical enough, artistic enough.

All my life, dear body, you have allowed me to feel pleasure, pain, laugh, do, be…and all I have done is be churlish and resentful to you, starving you, treating you poorly. Maybe I need to be kinder to you, stop loathing the fractured, damaged shell that carries me around, hating you for the pain, instead marvel at how you keep working despite the damage, ow you release chemicals to try and help me cope, respond to drugs to try and lessen pain, how you bounce back after illness. Be grateful for the five lives you have given me to cherish in the form of those magic, living incarnations of joy, those children who are my absolute pinnacle of achievement and delight. How you can feel so safe and right in the arms of the bloke, how it feels like our bodies are just the right size to hug and kiss and love one another.

So, dear body, I will try, in this hopeful second half of life, to care for you better, in the way you deserve. I can only try to make the pain we share better, but I can recognize you try to work through it with me. I guess we make a good team, body. In fact, I have long thought that, even offered plastic surgery for the bits I really wish were different, I would reject it for this comfortable, familiar old shape. You have been my home for 46 years now, counting the time in utero when you had become my body, so I think we are in it together now for the rest of the journey. I couldn’t think of a better body to be in.

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Make-up can be a complete pain in the ass Mamamia

Make-up can be a complete pain in the ass Mamamia.

Well, I have a confession – I turned 45 in Feb – and I’ve just STARTED wearing a bit of makeup.

Powder, eyeliner, skerrick of blush, a clear gel for my already long lashes (damn lucky genetics there), and some lippy (wonderful side effect, my lips aren’t as dry from air cond any more. Oh and Neroli Jasmine perfume. Have long long LONG loved that. All (yes, all) ethical  products.

I have also started dressing nicely ( #Metallicus, I adore you). I feel more confident, and as a disabled woman in a male dominated world (I am a developer in mobile phone software, a research project co founder, and as of next semester, adjunct Uni lecturer), it really changed my outlook.

Of course, I do none of this without the input of daughters two and three, Ms almost 20, and Ms 17.5.  Ms17.5 is my accessories critic of a morning – a gay daughter who loves playing the role of critic to the HILT, imagine your own episode of Queer Eye…:))

I wish I had known how to do this years ago, but I was busy (from age 19 onwards), being as good a mum as I could be, while working on IT stuff. And I was younger….

Do I think all women SHOULD have to? Aww HELL no! But it has worked, in reverse for me. It is kind of like my uniform, getting me into work mode. I do use makeup wipes (no soap or alcohol) in car now on way home – start the process back into daggy mum mode:) and I also love not doing anything on the weekend:)

What is happening for me atm?

As of yesterday:

1) doing PhD over next few years
2) frantically coding for May release for the Serval Project
3) now working for the next two years at Flinders University as an academic – a lecturer in two Comp Sci/Eng topics
4) after two years, if all going well with PhD, get employed by uni as perm staff
5) continue with the growing excitement of Serval
6) one last trip to IEEE as handover- but continuing research on IEEE network issues
7) we have a sleepover party* for ms 10 tonight, so caused epic spring clean, very little of which i can do with disability

 

*5 ten years olds – meep!

The TSA isn’t staffed by just bad guys

I was reading another article about how rude and power crazed the TSA (US Transport Security Authority, ie security at airport screenings etc). And I had been made really nervous as a result of stories like this. Now, I am about to add to the wealth of anecdote with my experience last trip – bearing in mind the plural of anecdote is NOT data, anecdote is not fact but a single experience recounted, fwiw.

So there I am, in wheelchair, and super worried, after a fifteen hour flight, jet lagged, and never travelled a distance on my own. Disabled and more than a tad freaked out is an excellent summary. I arrived at Dallas/Fort Worth, the largest airport in ghe US (if not the world, i was proudly told by staff). I then had to fly on to Atlanta.

I can only recount I met nothing but politeness, calm courtesy, and people bending over backwards to assist me, from airport staff AND the dreaded TSA. I have no doubt there are bad TSA staff – employ thousands of people dealing with stressed out travelers, and you will not have consistent good people skills at best, and genuine jerks at worst. Some people go power crazed with a small amount of authority (and a shiny badge and uniform), but I was fortunate enough not to encounter them, every single agent handled me with respect and courtesy, made the pat down as non obtrusive and invasive as they could, and kept me informed every step of the way.

So eager to assist me, that one accidentally broke the zippers on my (previously super carefully packed so everything fit just do) backpack, by packing it for me while I got a pat down, and pulling on the zippers too hard. So I needed to replace the bag, shrug, they were so heartbroken I couldn’t argue, and it wasn’t a hugely expensive bag – I could have claimed, but as an Australian traveling through, hassle wasn’t worth it for a clear accident through goodwill.

I only encountered a degree of indifference at Atlanta airport, when I finally arrived, and was led to luggage carousel then abandoned. Other passengers started to help me, when a lovely airport staffer arrived, and seeing me in wheelchair waiting for a bag, went and got luggage trolley, and assisted not only me, but the passenger near me who was also struggling. So that degree of feeling a tad lost lasted, at most, ten minutes. I can live with that:)

When I left, it was in reverse, Atlanta to Dallas/Fort Worth, where the lovely staffer who had met me last time made huge effort to greet me again, and made sure I was well taken care off. Atlanta TSA staff were, if possible, even kinder than DFW, and we’re delighted when I explained the mirrors used at Sydney to check under wheelchairs, and hoped they could introduce them to save back issues there. Glad I could help these lovely people.

All of the TSA staff were frantic busy. All of them showed courtesy, patience, sweet natured concern for my well being, and efficient processing.

Now, I may be posting prematurely, in that I travel to the US now every two months this year, and now with scooter, so may find more difficulty. And I may report back outrage and bad experience. But for this all important first nervous trip alone, I can only express my gratitude for the staff, who despite having many people to process, were so kind and considerate to me.

Disabled in Australia, 2011.

I can walk, but not much, or far, before a spinal injury incurred in an accident that was not my fault decides that no, one step too far – stop. Pain. Pain like you can’t imagine. Like you don’t want to imagine. Sometimes it means my leg doesn’t work, the sciatic nerve screaming in agony, the muscles of my lower back spasming beneath my hand as I desperately try to settle it somehow, supporting the aching expanse of pain that has become the lower right hand side of my torso.

So I am mobility impaired – as I believe is the current term. I will also say crippled, because I am. I am not differently abled. I use a walking stick for small distances – my current limit is halfway down my block  – four houses – to the shop and back again. Then a lie down to settle the back a bit. But I keep trying. The rest of the time, a wheelchair. New in my arsenal, a scooter. Currently an old model, I am looking at buying a new one to replace the wheelchair. Because then – then I am independent. With the right model, and some clever ramps and devices, I can get it in and out of my power steering blessed automatic station wagon and get myself up that steep ramp, through the length and breadth of the shopping mall. Cope with the travel I do for work.

Because I have not let this stop me – as a matter of fact, I am doing far more than I could have dreamt of – starting my PhD studies, travelling overseas every two months Okinawa, Hong Kong, and Atlanta in the US under my belt in last three months already:) ) Working and studying and living. Like any normal person, I want to be able to strive, to work, to dream and dare, to live.

And when I use normal, it is different to many. Normal means anyone self aware. We all, as  humans, wish to strive and work and attain and hope and dream and do, and most of all, to independently achieve, not rely on others helplessly, feel a burden.

But I have to say, society often makes it damned hard. Oh, it isn’t deliberate. The world isn’t made for us, really. So things like this register. And I know, I know. We are supposed to be grateful for any advance. We are so often voiceless, or disempowered or disenfranchised, that any advance is good, right? Hey, you people never had it so good.

Yeah. Thanks and all. Really. Thanks for thinking we might want access to entertainment. Or planes. Or taxis. Or doors we can open. Little things you tend to take for granted – unless you are disabled in some way.

I know I sound ungrateful. I just am not grateful. If you think about it for a while, you may understand why.

 

This week’s Angry Cripple column is written by Disability Discrimination Commissioner Graeme Innes. It’s a celebration of all the great work done for, by and on behalf of the disability sector as well as a slap across the face for all those who could and should have done more for the cause.

via Disability 2011: The good, the bad and the patronising | Article | The Punch.

Outland – Disability, Australian, Scifi, Gay – ticks all the boxes for me:)

Image of alien planet and gender symbols

Image via Wikipedia

An Australian tv series about gay *(disclaimer) scifi fans – with a disabled woman? Could this appeal to me any more succinctly???

Btw, fans (like me) of the absolutely marvellous Boxcutters podcast have long been waiting for this:)

The new television series Outland, set to air on Australia’s ABC1 in February, has been described by some as a gay answer to The Big Bang Theory. Says the show’s producer: “[C]loseted science fiction fans will finally have a voice… a full family of gay Australian characters can go where they never ventured before – prime-time television.”

via Upcoming Outland TV Series: Australian, Geeky, Gay.

 

 

*(disclaimer)Ok technically my sexuality is fairly ambiguous, i subscribe to the love the person, notice the packaging later theory – I happen to love my husband, and have for many years, but have loved women too. I find both sexes attractive, IF I find the personality attractive – looks alone just cannot do it, and people become more attractive the more I like them as a person anyway. Thats another post though, but I just don’t get the need for labels and putting people into strict boxes of definition –  unless that is where they WANT to be).

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