One of hardest things to do when you are chronically ill or house bound is to make a life out of debilitating illness. It’s unbearably hard sometimes!
I often think back to my life before and wish I had those chances all over again. There is so much I would try to do differently. I would certainly appreciate my abilities more and not take them for granted. But they are wishes and this is reality.
So what now?
Today the struggles are real and it is a lot harder to make a happy and fulfilling life out of pain and challenges. Even with the help of a wonderful husband and carer, there are just some things that are beyond my reach now.
I find myself having to shift my expectations about life and living so that I can find something for myself within the mix. Having said that, my ability to create an enjoyable life requires much more help and physical assistance these days. If I want to enjoy some things outside the realm of my home I will need help and assistance to achieve it. Independence is a luxury that many chronically ill can not afford. Therefore one of biggest things about creating a happy life in my position is being able to get the help and support needed to access some life.
I suspect that Oscar Wilde had his own picture of what living is and I think that is an important point when it comes to assessing your own life and that is what yardstick you are using?
If we use a healthier or able bodied persons definition then we may be doomed to be forever just existing. This is an easy mistake to keep making since I was more able bodied for longer than I have been disabled… I know this won’t always be the case though.
These days going into my own garden is a real achievement for me, for anyone else this is a simple and mundane task. Is this living or existing then? My answer can change on any given day and that is also one of the challenges I must deal with i.e. The shifting nature of my feelings and abilities.
I consider myself an intelligent person so I have tried to look at these questions in many different ways but ultimately I must confess it is a real enigma to me not unlike the question posed by Schrodinger’s cat.
Is this a life or just existence? Or is it both?