Recently, I have been exposed to a number of articles and blogs by individuals suffering from chronic, long-term pain or other neuro-muscular diseases. There is a long list of these diseases (lupus, MS, GBS, endometriosis, CIDP, CRPS, ALS, cancer, etc.) that, almost certainly, someone reading this experiences or someone you love suffers. For those with these diseases, there is the constant struggle of trying to live a normal life, yet knowing that everything you choose to do means there is something else you cannot do.
I read a description of this constant struggle written by Christine Miserandino. She calls it The Spoon Theory. (You can read her full story at this link http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.) It is rather long, but, let me try to summarize Miserandino’s point in this synopsis.
Christine was having lunch with her best friend one day. Her friend knew her very well. They had been college roommates and remained close for many years after that. However, despite the fact that her friend had seen Christine suffer with her Lupus, she still didn’t seem to understand the overall impact the disease had on Christine. So, in the restaurant that day, Christine sought to illustrate what life with Lupus meant.
Christine found a dozen spoons from tables near her. She gave them to her friend. She told the friend that every activity of the day would cost her a spoon. Preparing breakfast cost a spoon. Getting showered and dressed cost her two spoons. She told her that when she was healthy, she thought she had an endless supply of spoons and didn’t have to think about them at all. However, now with Lupus, she had to think about everything… if her hands hurt, she couldn’t wear a blouse with buttons… if she had bruises that day, she had to wear long sleeves… if she had a fever, she needed a sweater. And, everything took longer than necessary.
So, very quickly, Christine’s friend had only a couple spoons left. She had to decide whether to use them to cook dinner, clean up her apartment, stop by the store for groceries, or make time for a friend. The spoons were quickly used up and she still had things she needed to do. She might borrow one of tomorrow’s spoons, but that would leave tomorrow even more challenging. If she ran out of spoons, she might not make it to work at all. And, she rarely had a spoon left to go out for dinner or fun with her friends.
Soon, Christine’s friend was crying. After all these years, she was finally understanding what life is like for Christine or anyone else with one of these chronic diseases. These individuals have a very limited number of spoons and, because things are more difficult for them, little tasks take more spoons that would be required for a healthy person. Christine explained that everything in her life now required her to consider how many spoons it would take and how many she would have left. Everything required planning. She could not do things spontaneously and often was left out of activities with friends. Christine concluded her time educating her friend by explaining that every spoon is a blessing for her. She never wastes or takes a spoon for granted. Yet, she sees others wasting spoons every day.
I have not done Christine’s story justice with my synopsis, but I hope you get the point. Healthy individuals do not realize how blessed their lives really are. Chronically ill individuals never waste a spoon. And, no one truly understands how difficult life is for a chronically ill individual unless you experience it every day. We need to realize again how blessed we are AND we need to consider how we might help our family, work, neighborhood, and casual acquaintances that live with these diseases every day.
So, for today, let’s be thankful for all the spoons we hold and, if we can, let’s try to share a spoon or two with someone that might just be using their last one now.
Have a great day! Today could be our “very best day yet” – so, be ready for it!