Getting to know you…(and me)
Hi, and welcome to my first post. I will gradually get to know you, (I hope), and you will get to know me. First off, as my esteemed peers have all done so eloquently and so beautifully, let me start the ball rolling… I went through a doorway the day of my accident, March 11, 2006, 9am on a Saturday morning. I didn’t know it, of course, but on one side of the door was my old life, on the other side, a new world of pain and change and loss – but also strength and growth. Of friendship and finding what matters. And of the family stubbornness that I had always been somewhat embarrassed by, which was now to be my biggest ally. The accident wasn’t my fault, though I do not hold any anger towards the poor man who hit my stationary vehicle through a moment’s distraction, pushing me into oncoming traffic. The two impacts were at 60km/h – the second impact, my airbag and seatbelt were now useless, so that did the damage. I am incredibly grateful no-one else was hurt, and to this day feel lucky my children were not in the car. I sustained severe spinal damage to four discs, two burst, two are bulging in the lumbar area on the right hand side. Three more are deteriorating on the top. So for those in the know, L1 -3 are dehydrated and thinning, L4 and down are the ones with the severest damage. You learn other languages when disability enters your life. I live with chronic pain this and from a trapped sciatic nerve as a result of the disc damage, and while I can walk, it is extremely limited. So I live in an electric wheelchair for work/shopping etc, and save my limited walking for caring for myself. I am gradually losing that as my condition deteriorates, and in a few years, will be permanently wheelchair bound. I was told after two years of assessment that I am Category 5, (Australia’s highest level of disability in terms of work assessment), and I would never work again. So cut to today, I am on extremely strong painkillers, and use a brilliant tilting electric wheelchair – my beloved workhorse, that allows me to take the pressure off my spine with a flick of the joystick. For the last two years I have been an academic – I lecture in IT/Computer Science. Before that I spent 18 months starting a research not for profit – after I spent a month or so mourning the prognosis, (I got bored with self pity remarkably quickly). I am doing Honours, so that I can start my PhD. I am very disciplined about taking my medication and resting as needed – despite once being quite uncaring of myself. I am a 47 year old mother of five, so this self disciplined approach allows me to do what I need to work – but still try to spend time with my family. I have three still at home, (one an adult, two pre teens), and two independent adults. I love spending time with them all. I have elderly father and incredibly supportive and kind partner – The Bloke. I imagine you will get to hear more of them as we get to know each other. I play the ukulele, and am (trying!) to learn the mandolin. I quilt and knit, (in my spare time, a term that causes me much mirth!). Eldest daughter is getting married this year, so that is providing interest and fun and tasks that I delight in being asked to help with. My father has just survived his second bout of cancer, and in his early eighties, I am aware the clock is ticking, ticking. Spending time with him matters so much more every day that goes by now. This is a lot of things happening in my life. It is a busy, frenetic world of life and love and issues and pain, much pain. But I am living it. I don’t listen to what I can’t do. I see what I can do instead. I was given a number, and a diagnosis, and a prognosis. All about the things that have gone, the things I am left with, the things I will lose. But I am not completely bound by it. As a technologist, engineer, and computer geek, I look to technology for answers. But also things like Mindfulness,(Cognitive Behavioural Therapy), and Western Medicine, and Therapies. I have a lot to say about all the miracle cures pointed my way, and the comments. The way people ignore me when I am out with my family, and assume they should address questions for me to them, (after all, I couldn’t possibly have a mind, could I?). The assumption that any work I do would be sheltered workshop based – and while we joke about it, that is not really what a Computer Science School of a University is. (Not that there should be anything wrong with it, either). The medical system, and the processing that leaves your sense of being a person lost in the paperwork. Of the critical need to find the right GP. Of the Insurance scheme for victims of car accidents in Australia, and how destructive that is physically and mentally, leaving people with more damage than they would otherwise have had. Of the ‘underground network’ that forms when you meet other disabled people, and you find out about the resources, the right people to ask, the hidden things you have to know where to go just to get what is needed. Of incredibly well meaning advocates, and how some of them cannot surrender ‘rescuing’ the disabled, and allow us to have our own voices, and the wonderful others, who hand us the loud hailers. But perhaps next time, I will start with the story of my first outing in my manual wheelchair, after struggling too long for the first few years as my mobility got eroded by the pain and damage. The liberation I felt in my restored independent freedom. And the polite stranger at the shopping who told me I should probably kill myself….