“Goodnight Wifey” I heard my husband say from our dark bedroom. I realised this was the first time we had slept in the same room since my spinal cord injury three years ago. It felt so normal and so odd. I attended the Skills For Independence course held last month at Sargood on Collaroy. This course shattered what we thought was possible for us. In particular, what I saw as possible in terms of capacity and independence. The course was extraordinary. The course was Monday to Friday, and Robert, my husband, stayed Thursday night and for the Friday sessions. There were about 16 of us, led by highly trained Peer Leaders, a support crew, some partners, carers, and the team at Sargood. One of the things that struck me the most was that every person there had lived-experience of SCI, and everyone had something to learn, as well as to contribute. I had never been with a group of people living with SCI before.
Seeing people learn expanded manual chair skills taught us all new skills, and showed me what may be possible for me. I am in a power wheelchair, and all power chairs at the course were fundamentally different. Having the opportunity to see the difference in functionality, turning circles, and the ability to travel over different terrains of different chairs was eye-opening, and fun. My injury is the result of treatment for cancer. The tumour was along my spine, and I got a rare side effect from the treatment, leaving me with damage from C2 down. I went to general neuro rehab, leaving in August 2019. They looked after me very well, however I now know that not going through a SCI rehab meant I missed out on access to a lot of support and training. When I left rehab I had two frozen shoulders, and had been in my power chair for a couple of weeks. I used a hoist to transfer from bed to chair, etc. Robert and I thought that this was as good as my capacity and function would ever be, so we should just get used to it, and adapt.
During the Skills for Independence course we discovered that although I have damage from C2 down, my upper body is strong, and I should be able to do manual transfers and use a manual chair. This is life-changing for us. We realised we had settled and accepted “this is as good as it gets”. While this attitude has worked, it is very limiting. I now see that we had made no future plans. No goals, no hope for improvement. After this course, I am now starting to self transfer from chair to bed. My confidence and resilience are greater. I now see how to develop so that I can self propel, and transfer myself into a vehicle. The Skills For Independence course has changed our lives, in so many ways. Our understanding of where I am now and what really is possible for me, has fundamentally shifted, and I am forever grateful for the community I am now a part of.
- June 23, 2022