MCSMN Blog

November 16, 2018

The Art of Slowness: The Abstract and Concrete in Chronic Illness – Experts by Experience

By kozachek

The desire to have control over one’s environment, and to have access to the fruits of life and labor, burns consistently in every heart. In the face of health adversity, realistically evaluating your ability, and pacing accordingly, is my best approach to achieve success. But this can be a challenge within our cultural paradigm of instant gratifications and unrealistic positivism.

Nevertheless, through examples of slowly articulated work, and delayed yet accomplished gratifications, I will illustrate how, at least in this patient's life, the slow rhythm of working gets things done.

The rate at which I’ve completed tasks, while managing Ehlers Danlos Syndrome, has varied with the degree of debility. There were years when I was largely confined to the home–and mostly to the bed. During those years I still managed to sit propped up to complete drawings. Early on, in a post-viral chronic fatigue, I was only capable of painting about two square inches a day. So that’s what I did–a week’s worth of effort yielding a small painting. When postural orthostatic tachycardia and intolerance made standing, or even sitting problematic, I splattered paint on to a canvas while lying down.

Understanding boundaries and setting goals within them is something of an art form in itself and requires a concerted effort on the part of the patient, family members, and caregivers. After addressing a number of spinal issues, for instance, I became much more physically active. One day I decided that, ready or not, I would tackle a rather demanding project. Our property had been damaged by a hurricane that had overturned large trees. Cement walls toppled, hillsides were gouged out, gardens plowed under, and a large cement patio in the corner of the yard was cracked beyond repair. After a day of slack-jawed disbelief and utter despair, I rolled up my sleeves and set to work.

Why would a connective tissue disorder patient, with craniocervical instability and unreliable stamina wish to do this? I suppose this goes back to that fundamental need to know that one’s efforts can yield concrete results–even if that requires significantly more time to realize.

Releasing thick slabs of concrete from their brick underpinnings, I began the task of breaking them up. It took several whacks but I finally broke up a 15-foot cement slab into four blocks. But how do I move these blocks?

The massive size and weight of the concrete blocks was daunting, yet I couldn’t give up. Standing back, I noticed that the asphalt driveway, below the cement, was on a steady decline. Perhaps I could alter the square blocks to make them round boulders and roll them out? And that’s what I did!

Inspiration can come from unusual sources. The only artwork I had completed during my epic cement patio removal, other than giant painted snakes for a march in support of science, were paintings of large egg shapes. For one of the paintings, I used sized paper and a number of large and small stamps. The small round stamps were inspired by the granite stones found in the cement aggregate.

Looking at them one might think that they are symbols of life or fertility. But they were inspired by the shapes of the huge cement slabs I could remove on my own–only after I carved them into egg shapes and rolled them down my driveway. In the very center of my concrete egg, I placed a red print from a stone seal that was carved for me by a Chinese calligrapher some decades ago. The words read, “Persist until the very end.”

The delayed gratification of getting this done? It was a slow realization of will. It is my hope that those in healthcare professions catch up with the slow realization that patients do have the will. Let’s help them find their own reasonable ways.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Janet Kozachek is an internationally trained and exhibited artist with a Master of Fine Arts Degree in painting and drawing from Parsons School of Design in New York, and a certificate of graduate study from the Central Academy of Fine Art in Beijing (CAFA). She is a well-known mosaic artist, and was the founding president of the Society of American Mosaic Artists. Currently, she is working on an illustrated book, You Look Great! Making Invisible Disease Visible. Her blog, Art of Janet Kozachek has updated art, stories and articles; you can find her online at http://kozachekart.blogspot.com/

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Tags: Ehlers-Danlos Syndrome, Experts by Experience, Patient Involvement

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