In the past 13 years I have obviously lived. However for many of the past 13 years I was only really able to exist and I certainly wasn’t able to play an active role in anyway in anybody’s life. Since having six lots of neurosurgery in 8 days in 2000, my life changed forever.
In 2001 my oldest darling nephew was born, then in 2003 my 2nd gorgeous one. In 2004 my sweet little niece came into the world and in 2006 my dear youngest nephew graced us with his presence. Even though I have been their Aunty for many years now, there were many of those years where I was unable to play an active part in their lives.
There were many years when I had to spend the time of their visits in bed. There were also many years where I was only up and about for very short components of their time visiting here. There were many times too, when they would come up and be at my bedside when I was in hospital. During those years I was too unwell to play any sort of role in their lives other than to just be an Aunty. However, fortunately they don’t remember these years.
Hunter won’t remember visiting me when I had a pressure monitor put in my brain in 2002, Angus won’t remember his coming along to my ‘Celebration of Life’ party marking the 10 year anniversary of my diagnosis, Stella doesn’t remember my holding her when I was so drugged up on steroids and morphine that I could barely string a sentence together, and Will certainly won’t remember me from the years after he was born where I was recovering from the major neurosurgery which I had earlier in in 2006, the year he was born. The saddest reality for me is that I also have no memories of them from those years.
It hasn’t really been until these past two years that I have been able to actively play a role in the lives of these gorgeous four children. In fact, the reality is that prior to these past two or so years I wasn’t up to actively playing a role in anybody’s life. My day to day life merely existed of existing – my mind dulled with morphine.
It has been to my utter delight in these past recent months to have been able to take part and actively play with my nephews and niece. Even though my hand- eye coordination has never been grand (more than a slight understatement!) it has brought me such incredible joy to be able to be ‘double-bounced’ by Stella and Will and fall over on the trampoline in fits of laughter. To be able to occasionally (when my hand pain allows me to hold a sword) beat Hunter and Angus in sword fights and to be able to lose miserably playing outdoor badminton and tennis with them.
Another area of life that I haven’t been active in much at all in these past 13 years is in cooking. Cooking, food, and flavours are one of greatest my passions in life. It is very much in my genes to be a ‘foodie’ (aka someone ever-so-slightly obsessed with food!) with my Nana being a great cook, along with my mother.
In the year prior to all the surgery in 2000 I was very into throwing dinner parties. It brought me such joy to cook the meal and then share it with 10 or so dinner guests, and then shape the leftovers into something delicious to share at a potluck lunch for up to 30 people on the Sunday.
However, after my chronic pain muscle disorder coming onto the scene, as a result of the 6 lots surgery, I struggled greatly to stand at a bench due to the pain in my back. I was also very weak over many years, and having radiotherapy and two more lots of neurosurgery, I found it really difficult finding the strength to stand at a bench and prepare food. I was able to do a small amount of cooking but it was only been making things that were quick and easy to make, and with my mother’s assistance.
In 2008 my pain condition advanced to my hands which made fine finger movements, such as holding cutlery, or a sharp knife, extremely difficult.
I am incredibly blessed in that my mother is an amazing cook and over the years she has cooked me stunning meals every night. Last year however, I reached a point where I decided I wanted to play a more active role in the kitchen and wanted to try to find ways to do difficult things in spite of my hand and back pain.
I spent a weekend staying with my sister and discussed all of this with her. She suggested I google ‘cooking with arthritis’ and to my amazement there was a book published in 2009 under that exact title. This book had techniques with pictures to show easier ways of cutting, stirring and doing difficult things in the kitchen.
Since that weekend I also researched and found many gadgets that are designed for people who have similar pain issues. These gadgets do very simple tasks that I have found near impossible since my hand pain issues came on. Tasks such as opening jars, opening cans, cutting, and especially dicing and slicing vegetables and stirring things. Many of these tools have been designed purely for convenience for able-bodied people but for people with hand pain issues - they are a life saver. These kitchen tools have helped enable me to get back into playing an active role in the kitchen and I love every minute of it!
Unlike many people who see cooking as a labour, to me it is such an incredibly satisfying experience and such a joy to be able to do it again. When I am preparing food and cooking I make sure I have my favourite music playing, sing a little and thoroughly embrace the whole experience.
Things such as playing with my niece and nephews and cooking could seem like such simple joys that I would never have realised were privileges if it hadn’t been for the weakness and pain I have experienced in the past 13 years.
I am so very fortunate to have been able to play a more active role in other’s lives in these past few years. It is also such a blessing that I have had a brain that can think and remember, with a few necessary aids. As I’ve come off the heavy pain drugs the cloud that hung over my brain has lifted and it has given me immense satisfaction to be able to support other people at times.
All of the things mentioned in this blog are just the norm for most people but because I had so many years where I was forced by my circumstances to be completely inactive I now find so much joy and delight in being able to once again play an active role in my life and the lives of others.