Elly's Thoughts
As part of an advocacy project to show how long people have been sick with the related syndromes, I tried my hand at making a quipu. I made 4 in all. The first was practice, didn't have much resonance for me, but I liked the 3 colors I picked, two more than the instructions said. One color would be so unlike me. This one had 10 knots and it doesn't feel right. 1 for each year of illness is the rule, but that is fuzzy in syndrome land. 16 years ago I had mono and began to have subtle yet severe (7!) problems. CFS diagnosis came 6 years later. First memorable symptoms of heat intolerance and Ol came in 1977, 25 years ago. That's too far to go back for this project. My other 3 quipus have 16 knots, back to mono. That feels right.
What came to mind as I tied knots means much to me...
In my second quipu, I used the 9 colors/rooms of Feng Shui, a recent hobby. To me, they represent life aspects (health, fame, career, family, creativity, prosperity, wisdom, helpful people and travel, and relationships) and also the many body systems weaving in and out of the knots. Sometimes being dominant, sometimes hiding deep within so as to be invisible. Just like symptoms and strengths come and go and attitudes and how we are doing, too.
I like that the knots are spaced unevenly even though I tried to do them consistently. This is a reflection of how the years passed. Symptoms, life, the feeling of how time was passing all seemed to change for each year. Some years seemed full of promise with new discoveries and treatments and others were coasting plateaus. Some were spent working hard at the illness, some against it, and some ignoring it.
I liked this 9 color quipu enough to make a copy to send as the one to the project.
I then chose to try a single color one. Yellow - the color of health in feng shui. With this one I could focus on the notion that good health has always been with me. Most body functions function most of the time. That health is more than the body, it is an attitude. And I could extend this idea to the 9 color one. That all aspects and things you need are there. You just need to tap into them. Sometimes they are buried deep and some time lets them come out again.
I left long tails on when I had enough ribbon. I wish there to be years ahead to make more progress.
I also had wonder in focusing on that the year I call onset is also the year of meeting my mate. The 16 knots show the years of having each other. Struggle and triumph. Give and take. There seems to be balance in my world.
Thank you for this opportunity to think in new ways and have a physical symbol of the road traveled.
Elly
Centreville, VA, USA