A tradesman reminded me how tedious it is being stuck indoors. It reinforced Emily’s independence after SCI as she left the house to catch a wheelchair accessible bus (M30) to Sydney University leaving me behind.
In my attempt to connect and advocate for carers I am trying to master several social media forums. Last night I wondered if a tweet would translate as a wordpress post, would just a title be understood to be a stand alone comment? Continue reading
As Emily has to stick to 1200 calories or 5000 kilojoules a day I aim to make them tasty!
Vegetables are our staple ingredient as delicious and healthy. Emily was inspired by Jamie Oliver’s recipe for vegetable chilli so with a few minor adaptations I cooked up a hot chilli dinner! Continue reading
I opened the April / May edition of my Carers NSW newsletter and read my own story! I have reproduced the featured article for carers who are not yet members receiving the newsletter or who live outside NSW, Australia.
A Carer Story…
I watched The Theory of Everything while on a long haul flight 30,000 metres over Alaska. My lasting impression from the film revolved around the care Stephen Hawking received from his wife, family, friends and colleagues.
The story line I took away from the screen was that Stephen Hawking developed his theories and had the opportunity to expand intellectually contrary to the devastating decline of his body because others cared for him.
I only managed 5 hours sleep last night for various reasons so when the alarm woke me at 6 am, when I looked at the temperature on my iphone, when I did the toe test and it ricocheted back under the doona – everything was telling me stay in bed. But I hastily dressed, slurped tea, fixed my light to my handlebars and opened the garage door.
It crossed my mind to text my cycle buddy that I had had a disturbed night which led me to prioritize sleeping rather than riding. No doubt she would have text-ed back politely. No doubt that staying in bed for another hour would have been warm and snug, but no doubt cycling into the crisp darkness, illuminated only by my lamp’s small circle of light, was the right thing to do.
After a jolly “Hello” for such an early hour we decided on a route and pressed on into the deserted streets and lane-ways. There is something quite unique about being up and out before the world wakes up. Dawn gradually shed its light on our route and our surroundings. The new day showed itself as a clear blue unsullied sky with the weak sunshine of winter bringing little warmth with its rays. We cycled the perimeter of our local bays and coves, each peninsular has a slope to the water’s edge and a hill back, we tackled our route with zeal as hot coffee beckoned.
As we settled into the cafe booth with our hands cupped around our warming drinks the effort of our early morning exertion was rewarded by our lively chatter. When I get back home I will still have all the washing, I will still have a meal to cook, the car to wash but I’ll be energized by my activity, I’ll be nurtured by my friendships and I’ll be less introspective. I’ll feel healthy and I’ve positively reinforced that I ‘m not an isolated carer but a socially included and engaged friend.
Experiences outside of the home reinforce my sense of self, reinforce my identity, reinforces that Emily and I live together but are individuals. Commitments outside the home assist me in delineating my carer boundaries. I am separate from Emily, we each have different interests and friendship groups. We each bring something lively to the other by interacting separately. Our relationship would suffer without space, freedom and separateness.
There are pro and cons to road biking but one advantage is it’s an early morning sport and I can be home before the dog has opened an eyelid or stretched her hind legs, before the morning routine is scheduled. I have the perfect opportunity to maintain myself without any detrimental effects on the household. I am not suggesting that every carer takes up cycling but I do advocate that carers take some time in their day to do whatever tickles their fancy. I know Emily and I cope better if we have both been out and about and engaged socially. It’s worth getting out of bed………
I thought I was normal but this week I found out I am not. I undertook an impromptu shopping mall health scan in-between the salad and diary aisle. Apparently my left leg is shorter than my right leg, my right shoulder higher than my left, I have some spinal scoliosis that a banana would be proud to display. I returned home to disclose these details to my family while I unpacked our groceries. It is a wonder that I manage in my crooked skeleton? But manage I do and I actually feel very well contrary to reports dwelling on my short left leg.
The more I learn of the human body the more it amazes me. Human differences are infinitesimal; the range of eye, skin and hair colour. We are a wide range of short to tall, thin to fat, hairy to bald, healthy to not so healthy individuals. We live transient lives shifting in-between fitness and flu, losing hair and gaining weight, getting our teeth filled, our hair cut and our spectacles re-viewed. We are constantly altering and aging.
The fact is we are all individual, we suffer with short left legs, grumbling appendix and irritable bowels, we have cold sores and heat stroke. We have tennis elbow, gardeners knee, cauliflower ears and dogs breath. In days gone-by I would have been totally unaware that I was unfortunately walking around with a short left leg! When I consider the range and variations of normal within the human race it amazes me that people still stare at wheelchairs? I am definitely more odd than Emily but the wheelchair still draws a crowd.
The 20592 hours since 1st Feb 2012 has been a whole lifetime as Emily has had to adapt and re-learn skills, review her lifestyle and future goals. I have had to alter my life too and accept everyday caring as a major component. The interval statistics are more than just numbers they are a numerical display representing our journey; 2 years, 4 months and 7 days highlights a physical, emotional and educational differential that has transpired to date. The journey has been breathtakingly hard at times; it required more effort and endurance than we imagined or could ever have predicted or perceived at the beginning. But here’s the truth – I never envisaged Emily and I would be so positive, planning European holidays, she’s back at Sydney University and enjoying life – so soon. I can’t deny my excitement about where we will be in the future.
I acknowledge our start point 122 weeks and 4 days ago. We have moved forward but not without effort and a determination to improve. I was driven to read, research and understand more about spinal cord injury. It was natural for me to want to improve my comprehension of carers and everyday caring practices. There has been no complacency because both Emily and I are constantly seeking to acquire further education, more experience and greater confidence. All these elements unite and are demonstrated as a life full of positive liveliness. The entire family shows an animated spirit and vigor which heartens our resolve to be resilient.
In the 858 days following the accident; I have created a blog, a Twitter account #everydaycaring, a Facebook page @everydaycaring, as part of my sharing journey. I am learning about caring, coping and social media communication. The availability of online data staggers me daily, the 24/7 opportunity to type into the search bar inquiries like days in-between calculator to get: 74131200 seconds since Emily’s fall is initially sad but also awesome.
For me it was a natural progression into social media communication. As I trawled the internet for information, fished for websites and news, an IT world opened up before my eyes on the small screen of my computer. I appreciated articles that shared empathetic stories and experiences, shared information and hope. I began to write a blog because I had too much information. I wanted to share because I was aware that the contribution of others supported Emily and my recovery, the assistance of experienced counsel smoothed issues and highlighted the better routes to travel. A few words of advice can facilitate, kind words helped us avoid the frustrations of failure. This social media communication tool can be accessed 24/7 worldwide, amazing from the comfort of my front room to yours!
I did not sell my skis because I am defeated as a skier, I’m not terrified after Emily’s accident although there is a degree of ambivalence. I sold my skis because I’ve moved on. Life goes on, life changes and we evolve and I am looking forward to Thursday 13th October 2016 exactly 2 years, 4 months and 7 days of living!
Today found Emily and I in a hospital waiting room, being a blogger and bored I decided to address the obvious; public area magazines. I undertook a swift impromptu investigation and can now initiate important timely debate.
I shouldn’t be surprised that the reading choices were National Geographic, Wheels and Time magazine, most volumes published pre 2000. I skulked around the display and concluded that MotorSport, Time magazine and National Geographic were the only publications that weren’t stolen so hence the heap of well-thumbed volumes on the rack. As I explained my initial findings to Emily she looked up excitedly “Oh – I like National Geographic, pass one to me!” Rolling my eyes as I thought she’d be more engaged in my sleuth report, I fetched the requested magazine and realised I was as intrigued as any person with no knowledge of anything auto can be and opened my copy of Wheels with a degree of quashed enthusiasm. “Ohhh, red car!”
I have attended clinics that captivate me while I wait with their offerings of OK, Cosmopolitan, Home and Garden. I was lulled into a superior waiting room experience as I mused what the celebrities are redecorating, eating and wearing. I flipped nonchalantly through pages of outdoor furniture that wouldn’t fit in my yard yet I still lingered and contemplated colours and cushions. In fact I found being ushered into the doctor slightly annoying as I hadn’t finished the article about Hugh Jackman.
But back to today, still in the waiting room, Emily had volumes of National Geographic to read, many editions featuring healthy glaciers in snowy, cold fjords prior to global warming! I enjoyed the Women’s magazine minus the recipe pages that had gone home with an earlier reader. I am delighted to report that in this frozen time zone much of my living room decor is in fashion. I retrospectively learnt about world events and Formula One motor sport. I have now been in this time warp long enough that I question anything printed recently, it’s probably old news freshened up for its second lap. Then it thwacked me like a rolled up newspaper – this is a waiting room ploy as I was so happy to see the doctor that I greeted her like a long-lost relative, such was my relief at being released from the holding pen circa 2000. Clever very clever!
Today I cycled early and thought pictures speak a thousand sunny words so here is a Sydney morning, I hope it brings sunshine to you. Continue reading