The accident, that rendered Emily quadriplegic, changed our lives forever but her paralysis hasn’t had an impact on her fun personality, drive and ambition or life goals. When catastrophe occurs we commonly seek to return to our normal. Striving for normality implies that only normalcy delivers a good life which isn’t the case. Being differently-abled in society is normal which leads me to consider what is normal ?
What is normal ?
To submit to the thought that only physically normal people can thrive is absurd. There are great role models in Albert Einstein, Alexander Graham Bell and Thomas Edison (all had learning disabilities), Hellen Keller (blind,deaf and mute), Barry White (blind), Christopher Reeve (traumatic spinal cord injury), Franklin D. Roosevelt (polio), Stephen Hawkins ( ALS, motor neurone disease). I would never underestimate anyone who is differently-abled as their capabilities are endless.
What is normal ?
Normal is defined as – conforming to the standard or the common type; usual; not abnormal; regular; natural. I look at Emily and see a normal young woman who’s wonderfully ordinary in her desire to work, love, travel and live fully. The pivotal aspect when perceiving anybody is an appreciation of their qualities, so in that regard Emily is perfectly normal with strong resilient traits. One factor that does inhibit the differently-abled is society’s negative discrimination and bias. I hope my blogs raise awareness and give insight so reducing the stigma of disability.
What is normal ?
Emily has achieved a high level of independence since her accident so much so that I forget that I’m a carer. So many tasks have become second nature and incorporated seamlessly into our everyday schedules. I read recently that coping is an active effort to do something about the source of the stress to lessen its symptoms. Whereas adaption is simply becoming used to the stress, with no apparent effort to do so. Adaptation is passive (1).
So in hindsight I recognise that in my coping phase I was actively addressing Emily’s paralysis, trying to simplify all aspect of wheelchair life while streamlining Emily’s return to work, rest and play. I am more passive nowadays as I have actively coped, progressing on towards acceptance and becoming used to our new normal. I haven’t been blogging recently for that exact reason because I don’t think we are doing anything out of the ordinary. It’s normal to have care workers arrive at 6am, it’s normal to travel with a commode and enemas! It’s normal to chop and cook meals with Emily at the Thermomix. It’s normal to phone each venue prior to booking to enquire about wheelchair access. It’s normal to schedule community nurses for catheter changes, doctors for annual reviews, Aclasta infusions at RNSH, kidney and bone density scans for a 28 year old.
I accompany Emily to the chiropractor, dentist, remedial masseuse and some doctor appointments as I’m needed to execute her transfers. It’s not something I discuss with friends or write about, usually, as normal routine activities for us. I plan my diary loosely knowing there could be unexpected requests due to wet weather or episodes of autonomic dysreflexia. The unscheduled hic-ups do impact on my ability to commit to paid work but flexibility at my workplace allows me to manage my shifts.
Emily’s life is normal, considering she was rendered quadriplegic only 6 years ago, she works, studies, travels, cooks, plots and plans exciting social and physical adventures. And because Emily wants to be independent and live her best life she has empowered me, as her carer, to be separate while attentive, I’m remain an individual by Emily’s endeavours and drive to be self-reliant.
There are several things that I need to acknowledge when I write about normalisation to a traumatic spinal cord injury / disability. Firstly no-one wants to join the exclusive quadriplegic club. Secondly no-one wants to live waiting for a cure so accepting any physical difference is important coupled with the realisation that no-one is limited by anything other than their imagination. Finally there is always hope.
Hope comes to us, this year, as UTS has partnered with SpinalCure Australia and Spinal Cord Injuries Australia to begin a trial in Sydney using electrical currents to jump-start the broken spinal cords of quadriplegics. Professor Edgerton from University of California, Los Angeles with Professor Bryce Vissel, Director of the Centre for Neuroscience and Regenerative Medicine, will run the first human trial outside of America. The multi-disciplinary team aim to stimulate the spinal cord to ‘hear’ the small signals that come through the injury site. Electrical stimulation has been shown to benefit blood pressure, improve bowel and bladder function alongside restoring hand function in quadriplegics.
What is normal ?
While Emily and our family are accepting of our new normal reading about exciting development instills great hope for improvement. Emily is cognisant that epidural stimulation may not lead to her full recovery but when you live life without hand function ….every little helps. No-one is living waiting for a cure but we wouldn’t be normal if we weren’t excited, very excited about Project Edge. Roll on 2018!
Cheers to 2018!
SCI cure is coming but don’t wait………..as the sun dawns each morning we wake to a new horizon – we must succeed and rejoice in lives lived to the full today.
SpinalCure Australia – Project Edge – featuring Emily!
Spinal Cord Injury Australia – An essential organisation for SCI – Emily works as a SCIA education officer and peer group supporter.
(1) Howard, Dr R. W. (1984). Coping and Adapting. Sydney, Australia: Angus & Robertson Publishers. Chapter 1, page 8.