To worry or not worry about a cure
After injuring my spinal cord in 2004 I had to learn many different things about managing my new condition. I had to teach myself about medicines and carers. Sometimes this felt difficult but it was important. I wanted to understand these things in my new life as quickly as possible so I could start enjoying the world again. During my research into spinal cord injury I also came across many stories and articles about cures. I read many articles but then decided it was more important to rebuild my life and worry about a cure later on.
Posted by: Rachel Croucher, on 09/10/12
I read articles about stem cell research.
Despite the sudden and traumatic nature of my spinal cord injury I didn't experience any denial, even from the very start. I had a friend with a spinal cord injury so I understood if my spinal cord was severed I would not walk again. I therefore became preoccupied with learning about how to manage my health.
I just wanted to return to study or get a job. I wanted to hang out in beer gardens and go to the theatre with friends again. I get bored very easily so I did not care if I was in a wheelchair. My biggest priority was to
get on with it.
Before I could get on with things I had to learn not only how to manage my health, but also how to navigate the confusing system of how to obtain the ongoing assistance I needed. Things like securing personal care and equipment I required to return home.
In my one year of hospital and rehabilitation, my days were mostly spent dealing with various government departments and researching the physiological impact of complete spinal cord injuries.
Terms like sympathetic and parasympathetic nervous system might as well have been in a foreign language. The acronym SPC made me chuckle and sing
baked beans and spaghetti for hungry little human beings in my head. Aperients were little alcoholic drinks you had before a meal, right? Was dysreflexia a type of stretching exercise? Was a pressure lift a type of hoist?
Initially I also read lots of articles about stem cell research. There are many articles about this in newspapers and scientific journals. I would try to read various articles examining stem cell research and other investigations into a cure for spinal cord injury. But I had studied German and politics at university so I found all of the unfamiliar scientific concepts in these articles overwhelming.
I slowly realised my research into a cure was distracting me from my immediate concerns. I then decided that it was just too much to keep up with advancements in cure research. It became obvious that developments on rats' backs in a laboratory on the other side of the world were not going to help me establish a regular bowel routine or pay for attendant care.
My injury was nearly nine years ago but I am still learning about different ways to manage my everyday life. Because I do not have a case manager I have to organise all of my own medical and personal care needs. Gary Barling brilliantly explained the difficulties of this in his article,
Working hard, but hardly working. He said
for many people with profound disabilities the processes needed to sustain themselves is effectively work. I couldn't agree more.
So because I am still learning about my condition while holding down a few jobs, as well as managing all my own care needs, I just don't have the spare energy to worry about a cure. I just want to live.
Working hard but hardly working
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