SCI isn’t a board game but in an analogy friendships help you roll forward.

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.

Relaxation tips for Carers (the irony of that statement) but have a look:

Relaxation can be the last thing we think about during our busy day but crucially important for us all. Without a moment to remember ourselves within the daily routine we can loose perspective. Relaxation readjusts my psyche so that I am calmer and surprisingly more energised.

The list below also surprised me, it’s worth reading because we all know we should include some aspect of mindfulness or relaxation into our schedules.

• Take a massage – see a physiotherapist for a stress triangle massage – that’s a head, neck and shoulder massage
• Karaoke – Swedish researchers found that group singing helps promote a calm and regular breathing pattern that’s good for health
• Manicures are therapeutic!
• Hang out with close friends – addressing the same difficult scenario with someone in the same boat helps both parties cope better with stress according to a study from USC Marshall School of Business in the US
• Board games are an antidote
• Workout – play sport with buddies to forget any worries
• Yoga stretches relax the body and mind

All sounds good and there’s something in the list for everyone – just find time in the day and schedule friends for activities. Please don’t schedule me for karaoke or scrabble but I’m up for a massage, manicure and some yoga.

I plan my cycling early so that I am up and out, returning before anyone misses me.  If exercise is a time challenge then an early morning walk with Beastie (below) can energize me for the day ahead.

The message is don’t neglect relaxation or exercise as you need to care for yourself to be a carer to others.

 

Forget everything and sing in the rain!

So here I am at the Singapore Grand Prix. I know nothing about cars and absolutely nothing about F1 but I am addicted to the noise, the shiny roller skate vehicles and the extreme speed. I think there is some thing raw about watching powerful cars race. I surprise myself by loving F1 and yet I couldn’t recall any detail of our family car.

In preparation for the qualifying race – the safety cars did a couple of laps. The safety cars were silver Mercedes; one a regular saloon car and the second an estate. I am totally ignorant of why the safety cars have to run in front of the race at full throttle but it must be for fun! I just had to smile as the family estate was thrown around the circuit with a couple in the back firming strapped into their seats. I could imagine the family pooch in the rear having the ride of its life. I think the only safety stipulation would be that Fido isn’t allowed to hang out of an open window, tongue lapping the breeze .

Now the reason I am writing this is because we were lucky enough to be at the Singapore Grand Prix last year and I was so excited about everything, I took pictures of the cars, the track, the camera men and the puce fireman in full flame retardant outfit. We arrived each day as the gates opened and were the last to leave as the cleaners swept the Padang. This year is only my second experience and as a seasoned spectator I am so much more discerning. We arrived in a more relaxed manner and are not so impressed by the practice laps.

My sentiments regarding F1 are the same with life after serious trauma. The more I am exposed to SCI the less I am overwhelmed by it just like my exposure to F1. The reason I think it is important to write about experiences whether SCI or F1 is because repeated firsthand knowledge alters perception. As I attend more F1 races I have become more accustomed to the noise and speed and as I experience SCI as a carer I get used to the challenges so much so that daily challenges become normal.

It is a feature of coping with SCI or trauma that what appears difficult or unimaginable at first becomes do-able. And the more we practice and do stuff, the easier it becomes and then we realise we have overcome issues, we have achieved something and that success is there on front of us to be grasped.

Success revolves around familiarity and exposure to life, expanding individual boundaries and pushing towards a goal that originally evaded us. I can see SCI as a parallel with F1 as we watch the drivers push their physical skills to race in Singapore’s humidity, racing at night on a course with more acute corners than other competition circuits worldwide.

I think we enjoy the fighting spirit of competition and I see that spirit in Emily. I see her tested by her ‘course’ and the limits of her physical ability but she smiles and displays an inspirational effort to drive through to the checkered flag and a win.

Robbie Williams, as the evening’s  entertainer put it all into perspective. He came on stage as the heavens opened, a Singapore soaking. He was drenched, we were drenched but loved singing in the rain. Emily went home rolling through a river!

 

I can prepare for my daughter’s 21st and reflect nostalgically that no-one can be prepared for SCI. #SCI Awareness Month

My youngest daughter is 21 years old. We hosted a celebration lunch for her. I am not a professional chef so quite unprepared for the demands of event catering. I figured out the quantities to cook, some mathematical assistance from Martha was required! And just as I conquered the measurements I realised I won’t have to cater for such large numbers any time soon. The experience reminded me of Martha’s HSC year – just as I got the hang of the examination stress, trials and revision schedule it was all over. I suppose this dawns on every parent with their last babe. Just as we perfect our supportive roles our children leave the nest.

It is a good thing that we are delivered babes that grow slowly, whose needs change subtly so as parents we adapt and manage accordingly. No-one can be totally prepared for life as that would be preposterous as well as dull. Everyone has to learn, grow and adapt to meet the life that evolves around them, revising aspects throughout their lifespan, on the hoof!  Revising a recipe for a family celebration is fun, revising life’s goals after a SCI is devastating and more challenging but achievable and deserving of celebration just like any other life success.

Martha’s 21st celebrations made me reflect on Emily’s 21st party, we had no idea that 18 months later Emily would be quadriplegic. If we had any insight into the future would we alter our life’s course to avoid harm and accidents and would we live life to the full? I am glad we can’t read the future as it enables us to push boundaries, experience exhilaration and expand ourselves without being  totally consumed by fear of the approaching twists and turns of our life-time. Yes we risk injury but life demands we cross the road,  we drive cars,  we dive into cooling pools and enjoy the exhilaration of snow skiing.

I pushed myself to host Martha’s 21st and prepare the quantities required for our guests – I decided early on to over-cater rather like Christmas. I enjoyed trying to rise to the catering challenge and I see that this trait runs in the family whether party food or SCI recover. No-one is prepared for these one-off events so I aim to exert myself to the challenge and endeavor to enjoy party catering just as I facilitate Emily’s SCI recovery.

September is SCI awareness month, it is difficult to make people aware of spinal cord injury as it’s usually  traumatic, unpredictable and quite unimaginable. SCI is difficult to contemplate or be prepared for. Even if I advised everyone to lay still for a while and imagine not being able to move, after a time you’d get up and put the kettle on. SCI awareness is a challenge as uniquely incomprehendible so I blog with the aim of showing an insight into our lives and making people aware that life goes on and there is hope and happiness with disability. I’d like to make more people aware that wheelchair users are regular individuals  – see the individual not the disability. That’s being aware!