Emily and I have been venturing out even in this winter weather. We have been investigating new venues and revisiting old favourites. The NSW State Library is a handy meeting place on Macquarie Street as fairly central in Sydney and there’s a great little cafe, bathed in sunshine the day we went. Continue reading
Singapore was our destination for a delightful respite from Sydney’s chilly winter as; constantly warm, mostly sunny with the odd dramatic thunderstorm and accompanying bolt lightning for show. Most impressive for us is Singapore’s wheelchair friendly!
The hardest part was deciding when we had time to travel, as soon as we picked our dates and destination most everything slipped into place. Continue reading
Emily has increased her physiotherapy sessions. We now attend for three hours of fun packed exercise and stretching. Afterwards we return to the car for a late picnic lunch whilst diving home. Today we were enjoying cheese and pickle rolls listening to FM radio tunes. I passed Emily her Jazz apple and remarked how delicious and crunchy they tasted. I chatted amicably to myself before realizing that, rather like Sleeping Beauty, Emily had inhaled an apple shard and was silently choking to death.
Our outreach physiotherapist had recently taught me the assisted cough maneuver, her instructions were clear but unfortunately we hadn’t practiced them in a vehicle traveling over speed bumps while each individual was safely strapped into their car seat facing front. It was at this point I placed my foot heavily on the brake and started walloping Emily across her back.
I asked the rather pale, gasping for air, Emily if she could have alerted me earlier to her demise. “Could you make more noise, wave a hand but never choke quietly.” After our emergency stop and several hard thumps, Emily started laughing. When she caught her breath she couldn’t stop chuckling at the thought that I would have driven home completely unaware of her predicament, singing, car dancing and happily chatting to the radio.
Postal delivery vans and council refuse trucks have informative notices for the car behind alerting drivers of their frequent braking. I would like a sticker on the back of my car to alert anyone not three full car lengths away that I may brake heavily and frequently during CPR or the Heimlich maneuver. My sticker would alert other road users that In the case of an emergency the passenger will be dramatic, causing the driver to be erratic.The choking rescue viewed from a car behind probably looked much the same as my usual car dancing routine. An alternative approach would be if my car rego reflected my driving ability at times of drama –
Emily is enormously brave everyday. As her carer I feel a tiny winy bit brave facilitating and advocating for her, addressing situations that are completely new and unimagined only two years ago. No one can be prepared for wheelchair use or everyday caring but resilience can be found.
I felt brave when I booked Emily on our first international flight to Singapore. Imagine how brave Emily had to be as the crew took her wheelchair to the hold – would we see it at our destination all in one piece?
I felt brave when I confronted the QVB parking manager as I didn’t understand the disability concessions used on the site. My naivety was obvious, it under-lied a bravery as I felt compelled to argue for clearer signage.
I feel brave every time I assist Emily to venues, arriving to unknown access, geographical slopes, ramps and steep curb cuts. Imagine her bravery when she’s alone.
I feel brave blogging my experiences, trying to communicate honestly to carers and wheelchair users around the world. I expose my vulnerable underbelly of frustrations and fears because I want to suggest to others that we are all challenged and struggling but that it is surmountable, frustrations and fears can be overcome. I’d rather try than not. I support the ‘can do’ attitude on my Facebook page @Everydaycaring. I feel brave trying to engage in the social media Twitter #Everydaycaring . I expose my vulnerability to help others, to show that we are all compromised and all have to exude bravery everyday.
A tale of everyday bravery occurred when we set off on the ferry for Circular Quay to the Museum of Contemporary Art. Our outing was wonderfully successful as we enjoyed a scrummy lunch overlooking the Opera House and chatted amicably about art and original thought.
Our journey homeward should have been straightforward; our ferry was leaving wharf 2 at 3.30. It was precisely 3.30 so to avoid waiting for the next boat I broke into a trot behind Emily’s wheelchair. I maneuvered Emily through the ticket barrier at speed and as the crew secured the gang plank we descended from the quay to the floating pontoon. I hadn’t registered the gradient so we quickly built up momentum. I wasn’t scared of the speedy descent but I was frightened that the small front wheels could hit a raised ridge which would pivot the chair and catapult Emily into the ground.
It all happened so fast, we were on the down-slope before I could assess the situation, no chance of stopping or readjusting our speed. At the bottom I slowly composed myself although flustered. I had undoubtedly risked a spill, not just a spill from the chair – a spill at speed. As I sedately pushed Emily onto the ferry, one member of the crew rolled his eyes at me, shaking his head. I fully grinned at him, quite puce from the effort of averting disaster while trying to retain an aloof gait of a drama survived.
The boat reversed off the wharf and as we passed the Opera House I looked at Emily. We started that nervous giggling that follows near calamity, whatever did we look like as we accelerated, out of control, down that ramp towards all the waiting human skittles in their orderly queue. No one actually ran away shouting “Save yourselves” but the whites of their eyes told the truth of their alarm.
The ferry man waved us off at our stop and as the boat went to pick up others passengers around the bay we started the steep ascent up the pontoon ramp to land. These pontoons have held their positions from 1899, were wheelchairs widely used or considered at that time? I’m aware of the tidal influence which adjusts the gradient so maybe at other times the slopes are gentler?
Whatever my feelings as a carer I reckon Emily deserves a medal for holding her composure during an ear popping, hair-raisingly rapid ramp decent without a murmur of abuse towards me. True trust in her carer? Or a display of new found bravery in her new found wheelchair world. No-one can imagine addressing life in a wheelchair – it’s brave with a capital B!
It took Emily and I an hour to cross the Expo threshold because we couldn’t stop talking! It was a lovely opportunity to catch up with our friends at SCIA and refresh ourselves with their news, while becoming chummy with Charlie, a sleek black labrador service dog.
SCIA gathered service and product providers, support organisations and a range of equipment together into The Australian Technology Park, Sydney. Parking was free and we accessed the venue, Bay 8, with ease. There was ample space inside for this gathering of exhibitors, powerchairs, dogs, children, cafe and carers.
Emily had been asked to participate in the SCIA Exercise Rehabilitation Program demonstration at 11.45 and 2.30pm so we relaxed into our day at the venue. The SCIA Walk On Program “is an individually designed, intensive, activity based program that assists a person with spinal cord injury to improve and maximize their functional ability and lead a more independent life. Exercises are performed out of the wheelchair one on one with a qualified Exercise Physiotherapist or physiotherapist”
Emily thoroughly enjoys her sessions at Walk On, she gains from the positive energy, boosting her confidence and moral as well as benefiting from the practical therapy. It is also an opportunity to structure therapy ideas and re-energize rehabilitation goals.
We met so many friends we knew from Royal North Shore Hospital, Royal Rehab and other SCI organisations, networks and workshops, my voice grew horse! No one could escape the natural charisma of Duncan Wallace, the Executive Director at Spinal Cure Australia. Duncan is energetic, enthusiastic and engaging, he spoke to us with insight about his vision for spinal cure in Australia, he vocalized about the power of the group and the need to educate politicians, the need to speak as one so our voice is heard. See here. Like their Facebook page to follow their news.
My next stop was to meet the staff at IDEAS, Information on Disability and Education Awareness Services. Wow is the descriptive that comes to mind, one phone call to access assistance. Their newsletter is packed with information and with information comes choice, and choice matters! IDEAS NSW; “is a free telephone information service for people with disability, their family, carers and other supporters” – call 1800 029 904. Ask them questions, IDEAS give you the answers and you make the decisions.
I went on to meet Trudy Rice who helps arrange holidays for the disabled at Time Fly’s Travel. All services that expand the opportunities offered to people with disabilities must be embraced. I have St Petersburg and The Great Wall of China on my bucket list with Emily! I took away Cruising from Australia, Thailand and Malaysia travel brochures to read over coffee.
Carers NSW was also on my to visit list when I saw the Expo floor plan, I was delighted to introduce myself and received a warm welcome. I am becoming more aware of the wealth of newsletters available but actually most organisations are Online, as well as on Facebook or Twitter. The internet and social media is an interface that works well with isolated carers in rural homesteads or if carers are housebound with their role. The internet can be accessed at your convenience and information is updated so the latest news is at your fingertips i.e here!
Carers NSW; “is the voice of all carers in NSW. The vision is for family members and friends who provide care across the state to enjoy improved health, well-being and recognition by governments and communities.” See more here.
Bay 8 was filled with exhibitors, service providers and support organisations.. Emily and I found ourselves talking to company directors about products that may not be appropriate for her immediately but we are aware of them and their development so in future we can access these resources. Having the opportunity to see and discuss the available services and products is empowering. It broadens our horizon, expands our choices and will enhance Emily’s independence.
As a carer I am interested in products and SCI services because anything that promotes Emily’s independence – reduces my role, I enthusiastically embrace positive change, SCI service development and advocacy (individual and within organisations) because as a carer I want to be made redundant. My greatest hope is that SCI is cured, that improvements in SCI care offer people hope, that improvements in technology offer freedom from a life time of wheelchair use. I welcome SCIA Walk On Program as it improves functionality, develops strength, physical stamina and skills that increase Emily’s involvement in her everyday life, her studies, volunteer work, her sport.
Within the extremes of SCI there are many differences but we are one community. We have to come together to empower ourselves with one voice and we have to work together to facilitate positive, practical change in an aware and inclusive society. The SCIA Expo, in my opinion, was a rare opportunity to connect to numerous SCI service and product providers, SCI and Carer support organisations, to gain information that makes life easier, makes independence a reality.