Approximately 20,800 people live with a spinal cord injury (SCI) in Australia. Even more people are a close relation to, or a carer for, a person with SCI.
Acquiring a spinal cord injury (SCI), especially from a traumatic cause such as a traffic accident, sporting injury or fall, can inflict a huge and unexpected physical, psychological and economic burden on the person injured.
Over 40% of people with traumatic SCI, for example, are likely to develop post-traumatic stress and 30% will likely experience some form of depression.
A quick google search and you’ll find a heap of useful resources to help people with SCI navigate this life altering event and access mental health support.
But what about the community of carers, families and friends who are also feeling the impact of a SCI?
Two-thirds of people with spinal cord injury agree that ‘the role of family in terms of emotional, physical and financial support was the most important resource in being able to achieve goals’ (UNSW, 2013), but they are often underrepresented.
Little recognition is given to the people who are acting as pillars of support beyond hospital visits, rehabilitation and therapy groups, despite the huge effort they put in and the positive influence they have on the injured person’s life.
As part of this year’s Spinal Cord Injury Awareness week, we want to shine a light on strength in the community and the importance of carers (often unpaid, who may be a spouse, parent, or even a child), and the wider family whose lives have been affected by a SCI.
A community includes everybody involved, and everybody involved deserves to be looked after.
Speaking from experience…
Cassy Campbell, Acute Family Peer Mentor at SCIA understands what this feels like first hand, after her husband Forrest acquired a C6/7 spinal cord injury after a skiing accident in Canada in 2015. She has shared her story to let other families in a similar position know that they are not alone.
What were your thoughts when you first realised what had happened to Forrest?
Honestly, I had no idea what it all meant and we lived with the hope of recovery for quite a while. Mixed messages from doctors made the understanding more difficult as they had eluded to different outcomes depending on who we spoke to.
What were your primary concerns?
My main concern was what this would look like long term, how would this affect the kids, and how would we manage with a house that is two stories with all the living space on the second floor. There was also the worry of how we would financially survive the loss of two incomes over such a long period with very poor insurance it turned out.
We were 3 hours from our home to the Calgary Hospital and my time was divided between the kids and Forrest. I had to return home every few days over the Rocky Mountains to see if my kids were coping and managing without both of us. I drove while stressed and exhausted and I was afraid I would end up a statistic on the road myself in that state.
I had to rely on family and friends to comfort my kids as I couldn’t have them at the hospital with me but they needed some stability. That was the hardest part; not having my kids around and needing to shelter them from so much worry. They were only 5 and 8.
What challenges have you and your family faced?
The challenges were varied and many. Family dynamics from parents and close relatives became strained and our privacy was stripped away living in such a small town where everyone felt entitled to news, updates and details. Shopping became overwhelming just seeing folks in a small town supermarket was difficult to escape the questions, which were all well intended.
What kind of support did you have?
I had great support in the form of a close friend who was a physio and she guided me through a very stressful and overwhelming time. Our community was very supportive for a while, then everyone went on with their lives. We had to adapt and we still are even after 10 years.
It was a very hard time for our family. My mother was instrumental in our long term success as a family and we would not be where we are today without her love and support. I wish there had been more support post-hospital, as it was extremely limited and challenging in a remote and regional area.
Seeing how far Forrest has come in his own journey nearly 10-years down the line, what advice would you give to others who are dealing with a loved one recently sustaining an SCI?
Become your own problem solvers and solution finders. We called it ‘Redneck Rehab’ (small town Canada slang), developing tricks and hacks along the way that worked for us as we had no OT’s in town anyway.
It allowed us to do this new life our way. Often the most simple adaptations are the solutions you come up with using things you already have or can create with some ingenuity. Accepting help from those who offer is both a gift and necessary to not become isolated in striving for independence. It’s a balancing act.
In simple terms, keep looking until the solution presents itself, never giving up.
Where to find support:
SCIA’s Peer & Family Support offers free, non-clinical practical help for people with an injury and families in spinal units and the community. Whether you or your family need help accessing additional care, modifying your home, or finding the best transport options, our dedicated team are always on hand to support, without judgment.
Find out more about our services: https://scia.org.au/peer-support/
Contact the team directly: info@scia.org.au
Episode 35 of our ‘Have the Nerve’ podcast, ‘Where is the support for spouses and partners?’ delves into this topic further as Forrest explains from his perspective, how transitioning to a new way of life affected his wife.
Listen on all major streaming services, or via the SCIA resource hub: https://scia.org.au/podcast/