Making Art While Chronically Ill

You may have seen the term “Spoonie” before. If you are unfamiliar with it, it’s part of a viral internet trend about a woman with Lupus who is attempting to explain to her dear friend what it’s like to live with Lupus or another chronic illness that affects your energy. I highly encourage you to look up and read the entire spoon theory, simply for your edification. However, I will briefly summarize the idea.

People with chronic disease or illness have a much more limited pool of resources. The unit of resource available is depicted as spoons. Every action, as simple as getting out of bed, brushing your teeth, or taking a shower, uses a spoon. When you are out spoons, you’re out. You might be able to effectively steal spoons from tomorrow, but that’s going to bite you tomorrow. So you’ve got to be prudent, and practical in your spoon usage. If you aren’t, you might find yourself at the end of the day without the energy to make a satisfying meal, wash your face before bed, or engage in positive self-care.

I am a Spoonie. I have SLE, RA, Polymyositis, Narcolepsy with Cataplexy, and a handful of other secondary conditions.

Making art uses resources. Writing takes energy. I don’t know about every writer, but I write because I want to be read some day. When Fortune smiles upon me, the stars align, and this dog has their day, I will have an agent and be published. I will hold a physical representation of my will and creativity made manifest in this world, to be shared with all of humanity. That day, my friends, will be my ultimate return on investment.

Until then, there are minor payoffs. The completion of a Work In Progress, or the positive impression from a critique partner. The refinement and honing of my craft hopefully occurs with every exercise. Any kind of making of art that one wishes to share with the world, for commercial or personal enrichment, needs a bit of an ego. You have to believe that what you say and how you say it is worthwhile and holds value.

Writing as a Spoonie requires a special kind of arrogance. My resources are limited. Some days deciding to write means I won’t have the spoons to bake (a hobby of mine that I find quite rewarding). Baking produces a tangible and immediately valuable benefit. I feel less stressed and I have something delicious to eat. In terms of cost/benefit, baking creates something with undeniable benefit. With my experience in the craft, the cost is minimal and the potential that I would fail is rather low.

Writing, however, isn’t the same. I have no experience in success in creative writing. While I have been published in business writing, I have no such history with picture books or other pursuits. In fact, to the contrary, I have a stack of rejections from literary agents and editors. The price of my efforts, in terms of opportunity cost, is high. I could be doing something with a proven record of return on investment. The potential benefit is commensurately larger, in terms of monetary reward and fulfillment of the biggest aspiration and goal I possess (to share my vision with the world and potentially help children in need).

I am a Spoonie. My energy is limited, my resources finite. With my health concerns and increased risk factors in a world beset by COVID-19, I may die well before I see any return from writing. That is a very possible outcome that weighs on my mind every day. The likelihood that I will acquire an agent is low, and further the chance of being published is even lower. Thus, I must believe that what I have to share is truly special. If I didn’t, I would never take the risk. I continue to make art and hope — hope that this dog will have his day.