In this submission to Patient Voice, Claudia Goodell shares how she discovered a love of art which showed her a pathway to emotional healing, despite there being no physical cure for her debilitating illness. She also tells how she has channeled her skills into advocacy and action. Read on to learn more about how one MECFS/FM patient is painting her life…

Actor Jeremiah Kincaid has been credited with saying, “Your life is your canvas, you are the artist, so get painting. How you paint your life story will either inspire most or discourage some. I choose to inspire.”

Patient Voice topic for February: A moment when you experienced adversity
but were able to respond with grace, education or in any way that made you feel empowered

Just Paint By Claudia Goodell

I rediscovered my love for art and found my passion for oil painting after being diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia in 2005. Having previously worked as an audiologist and later in pharmaceuticals, chronic disease forced me to abandon my career to stay home and rest. What I didn’t know was that new opportunities were blooming.

During this challenging period of change I was encouraged by my son-in-law, a very talented artist, to ‘just paint’, but shortly thereafter we lost him to suicide. Having inherited the contents of his studio, his influence is present in my work. In the early years of learning to cope with all the loss and limitations that came with this chronic disease I felt a strong inner urge to create with my hands, and then there was this visceral change, as though my processing shifted from left to right brain, a sort of internal leveling.

Creating images is a long and mindful practice for me, sometimes beginning with conversations or photographs I take, and then merging ideas. I am inspired by people, music, science fiction, nature and color, and through art I am healing.

“Perplexity” is a visual representation of Claudia’s general coping strategy. Our reaction to the disparity between our preconceived life path and the unpredictable journey it takes us on can assume the form of jagged edges or curved lines. She chooses the latter.

I am primarily self-taught, with limited formal training. Based on Curvismo ©, developed by Ricardo, Chavez-Mendez, I have recently found a new sense of liberation in my creativity, and my new style is emerging. This process has enriched my developmental process greatly. Art is my new focus, and so I ‘just paint’.

To satisfy the need to utilize my science background and work experience, and to empower myself I have engaged as a patient advocate for several years, beginning with organizing and running an annual 24 hour mountain bike benefit event. Although it is no longer a benefit event and I am no longer involved, I have since served as a member of several CFSAC working groups and run a Facebook advocacy group.

In late 2009 my husband, an endurance mountain biker, suggested I contact a mountain bike race director whom we knew from racing to coordinate efforts in the creation of a 24 hour race to benefit ME/CFS. At 11 PM I sent her an email explaining my background, the disease and my intention for organizing an annual fundraiser. Her response floored me, and the rest is history.

Watch it here in my interview by Ken Holmes, a fellow ME/CFS patient at the closing of the 2011 event:

Note that throughout the interview I use the term chronic fatigue syndrome (CFS) because that is the name used in my 2005 U.S. diagnosis, but the disease now has many names. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the most commonly used name currently in the U.S.

You can view more of Claudia’s art here: https://claudia-goodell.pixels.com/

To join her Facebook ME/CFS Advocacy Group Page, go to https://www.facebook.com/groups/314293301959189/

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Do you have a story to tell? Send your entry to [email protected] We want to hear from you. Learn more about how to submit your entry to the Patient Voice HERE.

We love how Claudia channeled her passion into empowering not only herself but others through the Race to Solve CFS. BHC believes in the power of patients and the people that care about them to enact change, to rally support, and to engage the community around them in fundraising for empowering patients, advancing research and improving care. Share your ideas with us at [email protected]