Arabel Spent Quarantine With her Mom and her Paints: An HAE Patient Story

Arabel Standingbear sketches figures with lead pencils and paints realistic scenes with acrylics. Her poem was accepted by a museum. She has won in local art contests between schools, and was exhibited in a gallery by her friend’s mother of works from the school. She has been in different Native American art contests for her school, and been recognized by the tribe for it.

Also, she’s 13.

Arabel’s Art Accomplishments

Arabel explained she has always had art in her life because her mother is an artist too, and her grandparents always supported her art career by supplying her with acrylics, pastels, and lead pencils. Arabel liked her mother’s art and how it brought them together, so it inspired her to dive in too. She said,

“I bonded with my Mom over art. She says whenever I do art, it helps her, and inspires her as well. “

Arabel is often practicing, whether doing sketches of classmates in school or nature scenes around her house. She became known by those around her for her creativity. She said,

“Teachers usually come to me for art projects and stuff like that because I do a lot of art projects. I

try to get as involved in art as I can.”

She was recognized by her tribe for a poem she wrote about a walkout in her school that involved teachers leaving because they weren’t paid enough. She said, “It was supposed to represent teachers getting their rights so I basically drew a lay out of the building where they were walking out and a sign in front of it.” Her poem was selected to be presented at a museum, which described the weeks when her and her brothers went to a different school as the strike took place.

Her Technique

Arabel’s technique changes based on the subject. In general she prefers not to make it too detailed. Instead, she prefers to go by reference. She said, “It doesn’t matter how the matter looks, I do my best to create texture in the artwork.”

She prefers to create realistic scenes but what the subject is differs based on where she is. She finds the inspiration in her environment, which changes depending on whether she’s with her Mother in Missouri or at her Father’s in Oklahoma with the Osage Nation tribe.  “At my Dad’s in Oklahoma, I tend to draw people because that’s what I see. People in my class or animals, but we don’t have a lot of space to see nature.” While she’s spent the pandemic at her mother’s in Missouri, contact with people has been sparse, and she’s been absorbed by the natural life which she finds as the best source of inspiration.

“I’ve been [in Missouri]  for a few months for quarantine, I’ve been able to focus on the nature and wild life around me because we live above a park. We also live just next to a mini-forest so if I’m looking for inspiration, I can just go there and get it.”

Her preferred medium of expression- whether she sketches or uses acrylics- depends on that context. She said,

“During school I carry a sketchbook with me so I can sketch things around me,”

She laughed,

“I can’t sketch when I’m bored, but I do it when I’m busy.”

Her Connection to the Rare Disease World

Arabel became part of the rare disease community recently when her mother was diagnosed with hereditary angioedema (HAE). Hereditary angioedema is a genetic disorder that results in severe swelling beneath the skin. These inflammatory attacks can be triggered by emotional or physical stress but can also occur for unknown reasons.

Arabel has a 50% chance of having it and has slight symptoms, but as of now, she hasn’t been officially diagnosed. Right now this means that during quarantine, they get her mother’s medical supplies delivered and take care of her needs from home. Her medication needs to be refrigerated, which Arabel says can be an important detail. Their fridge went out recently and they had to get a whole new refrigerator, which is hard during quarantine. Arabel’s glad she can be around for when she has her indigestion, which takes place every other week and causes swelling. She can be there and understand how to treat the disease in case later down the road she needs to do the same. Her mother’s art sometimes focuses on honoring the HAE community. Recently she created a dress in a zebra pattern, a common insignia for rare diseases.

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What are your thoughts on Arabel and her mother’s story? Share your stories, thoughts, and hopes with the Patient Worthy community!

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