Spinal cord injury (SCI) isn’t a game but in an analogy it would be the snakes and ladders board game played in my childhood. Considering SCI there can be more snakes to slip and slide down than helpful ladders when manoeuvring towards a goal. The best ladder for us has been establishing some mentors. Our mentors are experienced carers and wheelchair users, they shed light on some complexities and the shortcuts that help life roll a little more smoothly. Mentoring is another word for friendship with a practical aspect to conversations, someone to bounce an idea off, someone to ask, someone to confide in or share in a joke.
Emily connected with other SCI patients in Royal North Shore Hospital, it’s the regional spinal unit for NSW, Australia. These early friendships witnessed the maelstrom of feelings which occur with an acute event. We were all challenged with our catastrophic situations and conflicted as we each addressed the instability of traumatic disability so these friends saw anger, disbelief, raw struggle and tears. But even in this storm of learning, conflicted thoughts and sadness there was support and care, there was enormous empathy.
Within my own acute experience I had a limited ability to share initially as my own burden was too great but there was an affinity, a kinship that didn’t need to be explored or explained. There was kindness and understanding yet still we were individuals within the unit, still on our own paths trying to cope as separate and distinct from the others. I still held the hope that Emily would recover. I thought we may have the ability to leave the group so there is a subtle disassociation because, at first, no one wants to accept they are members of the paralysed club or the elite quadriplegic group.
Only in Ryde did the process change because understanding, realisation and acceptance comes. Only at this point did I have a capacity to share and befriend individuals so we became a group. Having accepted that we were members of the SCI group, the group revealed its strengths. The group held different and diverse personalities that at any time could aid and support each other, some individuals had answers to questions that benefitted us all. Working within a group we all achieved more than we could separately, or maybe we got to a goal quicker with less slippery snake mistakes involved. Being in a sharing, caring supportive group is a practical ladder to success.
The group morphs positively as each individual grows in knowledge and experience. As confidence grows the group is more friendship that problem solving but at any moment there is always someone a phone call away for help and advise.
There are professionals in Royal North Shore Hospital and Royal Rehab, Ryde who play an important part in the learning and acceptance journey but it’s the friendship group that chit-chat, swap ideas and travel recommendations, it’s the friendship group that offer support weeks, months and years after rehabilitation discharge.
Paraquad and SCIA are excellent resources to join. Their websites offer a wealth of information and advise. SpinalCure and SpinalNetwork are important sites to support, read, to stay informed and connected.
As with the holistic big picture of life; SCI is all about a balance. Each of us needs the support infrastructure of family, friends, mentors, support organisations and networks to compliment our knowledge and learning. SCI and carer health is a fine balance and with more ladders it is easier to move forward.
Everyday Caring 