When I am at my most frustrated with this disease (multiple sclerosis) and its effects on my life, I grumble petulantly, “I can’t do anything anymore!)
I know it’s not true, but it feels true when I say it. All the able-bodied joys of running and hugging and getting out of bed on one’s own and stepping out on bare feet to greet the dawn – all those are beyond me now. There is a huge chunk of life that has been refused me because of chronic illness.
Because it’s so huge and because thinking about it makes me sad, it’s easy to let it loom larger than it really is.
I’ve been learning about nonviolent communication. What am I feeling and what need am I trying to fill? What are you feeling and what needs do you have? Asking these questions on a moment to moment basis and moving forward with empathy based on their understanding is at the heart of nonviolent communication.
On the long list of needs published on the website of the Center for Nonviolent Communication’s website (which they point out is neither exhaustive nor definitive), I was struck by this group:
It’s the area of autonomy that gets curtailed by chronic illness. I love that word. In ancient Greek auto, αὐτός means “self” and –nomy , νόμος means law. So autonomy means self rule – being able to decide how I want to do things.
Whereas independence makes me think of going it alone or pulling myself up by my bootstraps or other American mythologies, autonomy puts the focus on making my own choices and doing things my way. Independence seems impossible in my current body. Autonomy seems like a celebration of what remains.
As a person with significant disability (we’re talking quadriplegia, these days), maintaining autonomy means that I will be able to reach out to get other needs met: connection, honesty, play, peace and meaning. That’s good news. That’s the path to a life well lived.