I figured I should start the first column with an introduction, so here goes …
*stands up nervously*
*falls over and decides to stay seated instead*
Ahem … I’m Bek Oberin. Also known on the net as bekj. I’m 25 going on 100. I’ve been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Reflex Sympathetic Dystrophy in my right arm, Ehlers-Danlos Syndrome (Hypermobile Type), Osteoporosis, Neurally Mediated Hypotension, and some others I forget. I take this to be doctor speak for “There’s something very wrong with you and it hurts, but we aren’t overly sure what it is”.
I look fine though, except when I’m using my wheelchair or sticks. I look like a normal healthy 25 year old woman … well except for the crewcut, but that’s a matter of personal taste! Being invisibly disabled has been a heck of a learning experience, definitely not something I would have chosen to have but something I choose to learn as much as I can from.
I’ve been severely ill/disabled for six years now – the anniversary was on Christmas day. I manage to live by myself at home with home-help from the local authorities to do the housework, shopping and cooking for me. I hate needing the help but the alternative is to move back home with my parents and three little brothers, which we’d all hate more.
I’m a computer geek and a non-fiction writer by trade and by passion. Too sick to really work at the moment but I can still write, luckily. I bought an old 486 laptop computer and have it set up by the bed so I can sit some pillows behind my head and under my knees, and I put the laptop on my lap and tap away. A nifty cable connected to a thingy on the wall connects me to the internet and the world!
Aside from writing and geeking out, I also love gardening, cooking things without chili in them, reading, watching Good News Week (a weird Australian TV show that just finished), Buffy, Star Trek and good British Comedy (especially Red Dwarf), listening to the radio, playing and listening to an eclectic range of music, and days when I can go out.
In this column I hope to cover a wide range of issues related to invisible disabilities, including surviving is a society that goes on first impressions, advocating and sticking up for yourself, educating people, and also touching on a number of individual invisible disabilities to see where they fit into the ID jigsaw puzzle.
I’m looking forward to hearing from people, and watch this space for another column every week or 10 days.
See you then!
