Barbados recently celebrated 51 years of Independence. As with any other independence celebration there was some focus on history and the original independence day when it was declared that ties were broken and we were now free.
Free to make our own decisions, chart our own path, determine our own destiny.
Yet I am not so sure that the perception of independence is the reality. Looking at the country and all that we need to do to keep afloat I think independence has a different meaning.
As the celebrations were taking place all around me, I could feel my body waning. It’s amazing how those of us with chronic illness can just feel things happening. The slightest change and we know when a flare is approaching, when we need to slow down or stop all together. We just know.
I began to wonder about my life and how truly independent I am. after all I am an adult, the world says that I make my own decisions, chart my own course; after all God gave me free will. I can do what I want, when I want and how I want…right?
I guess on the level of theory that is all good. There may actually be the majority of people who believe this to be true and within the confines of of this world they live and operate as such.
What about me though? What do you do when the level of independence that every random person has is taken from you? What about being ill and your power of choice and decision is taken from you?
I can no longer decide to take the children out 2 days from now, or plan to go to the beach tomorrow or even just take a day to go shopping.
Every thing I do has to be done with illness foremost in my mind.
I was scheduled to participate in a church program two weeks ago and the day before I became ill to the point where I couldn’t walk. I was in crazy pain and had to call and inform the others that I may not be present.
I have been in the habit of always having a backup plan and making sure there is someone else who can do what I was scheduled to do when making a commitment. Its frustrating and depressing but its the wise thing to do.
Just yesterday I was lying in the doctor’s office on a morphine drip………..that was not my intention………….I planned to just pass by the office on the way to work and then jump into my day. The entire day went awry and my next 4 days have been decided for me. All my plans have been cancelled.
It just seems like every single aspect of my life is controlled by my illness. From my clothes, to my food, to my hobbies, to my plans, to ….just everything.
Last post I wrote about Counting the Cost of Illness , I didn’t look at the cost of my independence.
Sometimes, I feel as if I can’t do anything on my own anymore. I feel like people treat me that way as well. If I say I am doing or going X or Y, there’s always a series of questions or suggestions or offers to help. I’m conflicted because I know I need the help but there’s still the desire and need to prove that I can do it on my own. Its as if getting it done is some validation that the illness hasn’t taken it all from me.
So what is independence to me? What does it mean to those of us with chronic illness? I think Independence is about being strong enough to make the best decision for myself, to take care of myself. Sometimes that decision; the decision to ask for help or to let it all go and not push to do……………..that is true independence.
I just have to move that from the level of knowledge to behaviour. I know it’s true …..I just have to start doing it.
Like everything else surrounding these illnesses…………………..it gets difficult.