I recall the morning I talk with Johanna about how I might approach this new study based on nonalcoholic fatty liver disease (NAFLD). Initially, I envisioned painting a torso, 24×36″, with emphasis on the liver. That idea goes out the window as noted in the last post, when I come to understand NAFLD can affect any one of numerous organs and/or systems in the body. This information directs me to work a life-size human.
Having a deadline adds another twist. This is going to take a good while, I say to Johanna, right now, I need to find the right person, someone with NAFLD. Do you know anyone? I see her thinking, and then Johanna announces she herself has nonalcoholic fatty liver disease.
Why do I feel confused to hear this? Because Johanna heads the lab that is doing the research? Because she is a picture of health? Isn’t this a predominately Latino issue? You have nonalcoholic fatty liver disease!? For all noted thoughts and then some, comes the next question – Would you be interested in being subject-matter for this artwork? Think about it. Don’t answer right now. She explains some of the stigma surrounding NAFLD and a hope for people to overcome. Yes, she wants to do this.
I explain my process – I will photograph and outline you, Then I will interview you, asking questions – not only about your work but about you and your health. Because we plan to talk in a few days, I suggest she give all this more thought. She knows she can change her mind.
The following week, Johanna is in the studio being photographed and outlined. I ask lots of questions and she answers all of them. I learn it is possible she may also have Irritable Bowel Syndrome (IBS). It is unclear how NAFLD and IBS are related.
How did you learn you had NAFLD? What were your symptoms? Did you have a biopsy?
Liver biopsies, in general, are not routine procedure unless absolutely necessary. Because there are not a whole lot of clear symptoms, it is hard to diagnose. She had pain and slight swelling in the upper right quadrant of the abdomen. Doctor suspects ovarian cancer and sends her for ultrasound. Negative on the cancer. They do discover a problem with the liver. She was diagnosed with NAFLD two years ago this month.
To be clear, I introduce you to Johanna in the previous post. She is the researcher I am partnered with for this project. Neither of us could have seen this coming. Before the afternoon is over she talks to me about how frustrating it is to navigate a disease like NAFLD. We talk about women’s health, perimenopause, menopause as well as orthorexia nervosa (an obsession with eating foods that one considers healthy). We discuss big food industry. We talk genes, vitamin A, choline deficiency and gut dysbiosis. Johanna is generous to work with me in this way.
Johanna: Since I am becoming more vulnerable with people and disclosing this kind of information under certain circumstances and with certain people, I am discovering that a lot of people have digestive issues. I wonder what is up with this. Is it our food? Is it the anxiety that living in the modern world can sometimes incur? It’s an interesting phenomenon and it’s quite nice to not feel so alone on this journey.
In upcoming posts, I plan to share some of food she eats (and does not eat) on a low FODMAP diet. (FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. Yikes!)
I’ll leave you with two details I add to the composition, this weekend. Johanna tattoos (Here they are ↑ in blue – or more precise, a Payne’s Gray. Hard to render, especially over brightly colored intestine.), one is a floral pattern set along the right side of her waist (below the liver) and the other is a bird on her left arm.
Among other flowers she has milk thistle, an herb well known for it’s healing property (especially of the liver), which I read symbolizes endurance and courage. She has blue peonies, connecting to loyalty and trust and wild jasmine holding love and beauty. About the swooping magpie, who is known for its intelligence and reasoning abilities, Johanna explains: I got that tattoo a few months after my death midwife certification. Besides appealing to me in their “magpie behavior” of being attracted to shiny things, what I was really fascinated by was the magpie behaviors around death. When a fellow magpie passes, magpies will gather around the body and even lay grass “wreaths” in funereal fashion. Some ancient lore posits that magpies can traverse the boundaries between life and death. So I found it only fitting to choose this bird to honor my calling to death midwifery.
We continue talking about animals and walks in the desert – and the many ways to support the healing process.
A realization about the art, this post…all of it…
Listening to Zen philosophy this weekend, I am reminded of the fact that a mental interpretation creates a world, it doesn’t necessarily reveal it. I am basically processing a process. If you were to sit with Johanna and experience her directly, you’d be close (closer) to the truth than seeing the work or reading this. Her direct experience is.
©2023 ALL RIGHTS RESERVED BY MONICA AISSA MARTINEZ