I delayed publishing this post for two days as I queried why I reveal my inner self to the world, why do I feel the necessity to roll over exposing my vulnerable under belly, exposing my human weaknesses as a post on a blog .
On Tuesday evening, while I contemplated publishing, I read my Facebook news where I follow the Christopher and Dana Reeve Foundation, there I came upon a request for carers to complete a questionnaire. There were comments as I scrolled down to analyse the relevance of the post to me, a mother had written “it’s not even been 2 years (since the SCI) and I’m exhausted” then another, a partner of a paraplegic, asked for advise “as I’m at a loss and I’m terrified of the future.”
I realized if I want to connect with real people – I need to be honest in my blog and without exposing my own everyday failures and limitations I can’t reach out, hoping to connect and share with others. The unique everyday caring role I find myself living is balanced on a knife-edge as I care for Emily without question, I stepped up to the physical, 24/7 commitment , ongoing , lifelong without complaint. It is a rewarding role as seeing Emily well, achieving short-term and embarking on long-term goals is very satisfying and makes my facilitating activities worthwhile. Balancing my day between tedious routine and tiredness against reward and contentment is my daily labour.
I set out to post a light-hearted account of an everyday challenge, the challenge is to keep my sense of humour when I’m tired at the end of a long day, to keep my chin up and carry on. It is the right thing to do; do I have any other option? I published the post because I want to share with my peer group, it’s a tough role but rewarding and my blog wouldn’t be real if I didn’t expose my own struggle and failures but ultimately some happy accomplishments, please read my post.
I admit I’m tired. I can cycle 90 km to Wollongong, I can cycle twice (!) around West Head, I can carry a 5 litre container of chlorine to the pool, lift weekly shopping from the car, walk the Beastie but somehow I get exhausted making a cup of tea some days.
This evening I made a 5 ingredient salad, I steamed the chicken breasts, I peeled, chopped and roasted the pumpkin, I topped and tailed the round beans, boiled the kettle for the cous cous and crumbled the feta. I arranged a pyramid of ingredients in a large bowl. I flamboyantly presented the gastronomic delight to Emily who asked about the dressing. I had to refrain from dropping the tray as I carried the meal downstairs to make the dressing. I rather hoped we were going to use a store bought sauce residing in our overstocked fridge.
I looked at the recipe and wanted to break an egg. Breaking an egg can be therapeutic in a bowl; an egg broken on your head is good for your hair but bad for moral. I looked at the recipe and nowhere did it mention breaking any eggs – shame. The fleeting thought about egg cracking left me as I whisked oil, cumin, honey and white wine vinegar as I knew it was the delicious thing to do, the salad was complete with this addition.
I find it difficult preparing our main meal, at the end of the day, when I am tired and, albeit difficult to believe, grouchy. Meals are a complex mix of components as Emily needs 1200 kjoules a day, far less than a usual 24 year old female but her inactivity means any more would increase her weight. 1200 kjoules soon gets eaten up so the aim is to make every joule delicious and worthwhile. Emily has a malted milk biscuit in the morning with her cup of tea, only one as two biscuits would use too many valuable kJs and have no nutritional value. Each calorie must have a benefit – vitamins and minerals, protein, fibre or calcium. Fresh foods are preferential and I try to make healthy choices, lots of legumes, organic, free range eggs and seasonal fruit. Basically food is important, making meals delicious and nutritional is an essential part of my caring.
A favourite book of mine is Aimee Bender’s The Particular Sadness of Lemon Cake. A story about a girl who can taste the emotions in food. The child’s mother is unhappy so cooks meals that taste of despair and desperation. The book is how the little girl grows up to discover the taste of love in foods. It is this book that pops into my mind as I whisk my dressing. I know that each meal shared together is special and nurturing, companionable and the effort is rewarded by the tasty satisfaction of contentment. Whatever thoughts I have of gratuitous egg flinging it is dissipated easily and quickly by my genetic compassion. My cheery demeanor appears to persevere and motivates me when a salad dressing is requested late in the day. If you asked Emily she might say I took on the ‘sucking lemons’ look as I returned to the kitchen bench top to gather myself before I re-emerged with the second gastronomic presentation of the evening salad with dressing. Voila!