Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twelfth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.
Here is this week’s question:
Describe a good day in relation to the ways your life is affected by disability.
When I refer to a good or bad day in relation to my disability, I often talk about energy, or my lack thereof. My fluctuating energy levels influence the impact of my disability on my daily activities.
One of the best descriptions of how this plays out in every day life was written by Christine Miserandino. I have often referred to the “spoon post” when trying to explain my process of energy conservation. You can find her explanation here. It is well worth the read.
The theory uses spoons as a metaphor for energy. Every day you are given a set amount of spoons to use. The number may vary based on how your body is functioning on a given day. While I don’t consider myself sick, a word Christine uses in her essay, I agree with her description: “…the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.”
Every day, each task you perform requires you to use one or more spoons. You have to accomplish certain tasks, no matter how many spoons you have. So, if you wake up on a good day with 20 spoons and you only need 15 spoons to do all you need to do that day – it’s a good energy day.
But when you wake up with 10 spoons and you still need to accomplish 15 spoons-worth of activity, you have to make compromises. Instead of washing your hair, you may decide to wear a hat. Instead of making breakfast, you may just grab an energy bar. Instead of doing laundry, you may buy new underwear. Personal experience right there.
Good days mean I have good energy. Good days mean I don’t limit my activities because of my low energy. On good days, I have enough spoons to manage all the tasks required of me. I don’t have to make sacrifices in my plans just so I have enough energy at the end of the day to wash my face and brush my teeth. On good days I have the strength to lift my arm to brush the back of my hair. On good days I am able to lift a fork to my mouth without needing to prop up my right hand with my left.
A good day also means I have adequate Personal Assistant staff and don’t need to worry about how I will get out of bed in the morning, go the bathroom when I get home. On a good day, my staff show up on time for their shifts, in a pleasant mood. On good days, the phone doesn’t buzz at 4:30 PM (after I’ve had my afternoon cup of tea) with a text from a PA telling me she can’t work her evening shift, leaving me to scramble to find someone else to help me use the bathroom.
Personal attitude can make difficult days or low energy days less stressful. There are things I just won’t let ruin an otherwise good day. There are some mornings I will leave the house, get in my car, take a deep breath and tell myself we are starting the day over.
We all have choices in life. I am one of the lucky ones who gets to make more choices than others. Most good days, I choose happiness over frustration; acceptance over anxiety.