The Stories Behind Colors of SM

Clouds Will Pass

Sue, Living with SM

“The road to my diagnosis with SM has been lifelong. After a lifetime of on-again, off-again health problems, personal battles and my stubborn refusal to stop looking for answers, I was formally diagnosed in 2020. My ‘twist’ on SM is to be the voice of encouragement for the person who is still struggling to find a diagnosis! If I had stopped pushing for an answer at every closed door, every doctor who didn’t believe me, or one who specifically told me that SM was so rare they had only seen one case in 30+ years of practice – I wouldn’t be here today.”

PC Elliott, Artist

“I can’t ever express fully how Sue has inspired me. Her love for her family, her resilience and strength are formidable and unforgettable. I created this piece as a tribute to her ability to see that the sun is always shining behind the clouds. That like the clouds, this too shall pass.”

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Daring Skies

Sari Lipp, Living with SM

“This has been an amazing experience. It helped me realize that no matter my struggles, I still matter, am seen and can make a difference even in small things. My journey is an amazing one!”

Anna Feneis, Artist

“Sari boldly defies all the odds stacked against her and has accomplished feats that most people would not dare to try. But what truly astonished me about Sari was her beautifully creative mind. Throughout our process, I would often wake in the morning to a new poem she had sent me. I drew inspiration from her moving poetry, her bold personality, her turbulent health and her beautiful home state.

In this work, there is no clear definition between land or water, and the landscape can change with a flip of the canvas. I painted this way to represent Sari’s perpetual need to adapt. Her strength and fortitude are predominantly represented by bold colors and texture, while still retaining mostly soft edges and hints of pastel, to mirror her kindness and humanity. A most remarkable marriage of admirable attributes.”

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Flight Path

Jennifer N., Living with SM

“SM has made me become more vulnerable, and I’ve learned that vulnerability is not the weakness I once thought it was. In my experience, the extent to which SM affected me was often questioned. Concerns about my symptoms were dismissed by multiple doctors, needlessly extending my time to diagnosis. I frequently received pushback or skepticism when communicating that I felt too sick to participate in an activity. I then pushed myself into activities when I shouldn’t have, trying to mask my illness, which unfortunately triggered SM flares. I lost the version of myself that I was before SM. I was scared that this new SM version of me would be rejected by my family and friends. I felt more vulnerable than at any other time in my life.
 
The doubt and skepticism I experienced helped me realize that I had to change how I thought about and responded to SM, as well as how I talked to others about it. I choose to no longer spend valuable time feeling ‘less than’ or apologizing for the ways in which I may not be able do the same things or in the same ways as people who don’t have SM.
 
It was a gift to be able to share my story with Michele, who received it with an open heart. I’m hopeful our collaboration can shine a light on the unique challenges people living with SM face, and that this program can foster deeper levels of understanding.”

Michele Kellner, Artist

“This art piece speaks through symbols that arose within me as I listened to Jennifer’s story of her experience. The owl, known for its amazing keen sense of hearing, stands in such sharp contrast to the deaf ears Jennifer has encountered countless times in seeking help from the medical community. I heard her pain and frustration. I saw the toll that SM takes on her daily life. I heard and felt what SM had taken from her, but, in the end, I was left seeing and hearing the enormity of her strength, her love of life and her willingness to endure constant challenge in seeking and desiring her birthright to be free.”

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A Light in Winter

Jennifer S., Living with SM

“I’m grateful for everything I’ve been able to learn about this medical condition. Getting diagnosed was scary, but I have an excellent care team who has always helped me. It is nice to learn about others who also have this rare disease and to know I’m not alone.”

Russ, Artist

“It has been a joy getting to know Jennifer! We have very different backgrounds but share a love of the West. The poet E.E. Cummings has a wonderful line that describes Jennifer. He writes, ‘Whose hearts are mountains, roots are trees, it’s they shall cry hello to the spring.’ For all of Jennifer’s challenges in this life, she has a mountain heart, big and soaring. Many times, it’s hard to know what is coming with SM, but when your roots are the tips of leaves and all the sun it can absorb, you have more than a fighting chance.”

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Splendid Sovereignty

A.C., Living with SM

“Peace’s stillness has seen a drought trembling amongst a frightened earthquake, searching for a solid foundation where I’m safe and free to be.”

Kristin Wenc, Artist

“A.C. is a vibrant and determined woman who has overcome numerous challenges and obstacles throughout her life. A.C.’s tenacity and strength of character propel her to exceed her own expectations. She is the author of a truly beautiful reality, and I am honored to have received the opportunity to illustrate her story.

This piece is built in layers. Like her, the piece has been through some things. Each layer is a part of her narrative. Some layers are bolder than others. Intense movement is balanced with soothing passages to collectively evoke a sense of peace and stillness. Look past the surface of the piece to the multitude of gestures and marks that lie below. The complexity of its structure was built to reflect A.C.’s ups and downs, her triumphs and setbacks, and the vivid beauty that is her unique story.”

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Up in the Air

Mary Jane, Living with SM

“I have learned that we all need to be our own advocate. We need to research and ask questions. Most importantly, we need to lean into support given by others. Accept help from family and friends. We shouldn’t be trepidatious in joining support groups. The more we help each other, the stronger we are.”

Melissa Kohanski, Artist

“Mary Jane is a phenomenal photographer, and we connected through sending photos to each other. Her photographs have powerful elements of nature and beautiful bursts of color. I was inspired by her desert scenes and many images of hot air balloons.

I was touched by Mary Jane’s story of her journey with SM. It is complicated and heart-wrenching, but she has a positive attitude and is so caring for others. I created the foundation of the hot air balloon from a list of all the hospitals where she has had treatments. Everything is tinged pink – her favorite color.”

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