Colors of SM: Bringing to Life the Stories of People Affected by SM

Look Deeper

Acrylic
Vanessa H., Living with ISM
“It was a long and difficult road to getting a diagnosis of SM. I had been experiencing symptoms for over ten years, but only received an official diagnosis just over two years ago. For many years, I searched for answers, asking questions and hoping someone would help me connect the dots. Eventually, I gave up. I convinced myself that maybe what I was experiencing was just ‘normal’—for everyone.

I tried to ignore the fact that I never truly felt right. Even I started to think I sounded crazy when I listed all my symptoms together.

When I finally got my diagnosis, I was overwhelmed with mixed emotions. On one hand, I finally had a name for what I was experiencing. On the other, I knew that everything from this point forward would be a challenge. I felt incredibly low.

That’s when I came across this program and decided to apply. Meeting Emma—and allowing myself to open up and talk about what I was going through—proved to be an unexpected turning point in my journey. Slowly, I began to accept my diagnosis. I realized I didn’t want it to consume me anymore.

It’s a part of me, but it doesn’t define me.

Through this journey, I’ve learned that it’s okay to put myself first once in a while. And that acceptance doesn’t mean giving up—it means giving myself the grace to move forward.”

Emma Lyons, Artist
“This painting can be interpreted from both directions. You get to choose how you see my inspiration, Vanessa H., through this artwork.

Upon reading it from the back layer to the front layer:

Vanessa’s life before her symptoms and diagnosis had its ups and downs, its vibrant days and its dull days, but those were subtle compared to her life with systemic mastocytosis. This first layer is all one shade of pink (her favorite color) with ridges left from purposefully uneven paintbrush strokes.

And then the second layer comes crashing in: Vanessa described her experience with SM as extremes of hot and cold. Some days, she could live life similar to her ‘before,’ but other days, every single aspect of living somehow now irritated and attacked her body.

This was the layer she was experiencing when we first met. She was overworked with all the responsibilities from her job, always quietly putting others’ needs before her own, and wasn’t sure, even after 2 years with her diagnosis, how to effectively care for herself, because each day was different.

It’s so easy to empathize with having to take life’s punches day by day because we can’t see the light on the other side, isn’t it?

But then comes the third layer. In the duration of this program, I have gotten to see in real time a transformation in Vanessa: she said ‘yes’ to putting her needs first, quit her high-stress job, and joined the same company as her husband so she could be in a space to receive additional help in her daily life. Now, she said she feels like she’s floating effortlessly. She rewrote her story from one of unsure chaos to one that, even amidst her bad days, feels so free and easy.

And upon reading it from the front layer to the back layer:

What you see now in my inspiration Vanessa is peace and flow. She gives of herself from a place of rest and abundance, and it’s easy to get lost in her tranquility.

But look deeper.

She has worked for this peace. She has shifted her life and put her health at the forefront. And she’s had to, because living with SM has thrown her life into a chaotic journey with no set path that she has to take day by day.

But look deeper.

Because systemic mastocytosis doesn’t define who she is. Vanessa gets to decide that for herself.”

Scream With Your Inside Voice

Acrylic, ink, and Conté à Paris on canvas
Kaitlin K., Living with ISM
“This is one of the most topsy-turvy journeys a person can be on. I never know how I’ll feel day-to-day. I never know if I’ll be able to keep a plan I made or if I might instead be in urgent care or too sick to leave the house. The up and down nature of this disease greatly impacts my overall wellbeing and significantly alters my life and the lives of the people I love.

Over many years of being sick, I’ve also learned to try to embrace each day with curiosity, the spirit of play, and a sense of wonder. And of course, some days this can feel tremendously difficult. The uncertainty of living with a condition like this takes significant physical and emotional energy, and there are so many days I feel I have no energy at all.

Though I feel significant grief and loss around having to manage this disease, I’m very proud of the resilience and tenacity that I’ve built to help me navigate this bumpy journey. And though I often feel burdensome as someone frequently needing extra care and support, I’m also forever grateful to the community of loved ones I’ve built who care for me with such intention and generosity.

Everything in my life feels just so ‘both/and.’ Both sick and well. Both a burden and burdened. Both deeply discouraged and eternally hopeful. Both grieving what could have been and joyful for what I have and what I am.

While I regularly wish I didn’t have to manage this, I also deeply appreciate having learned to hold so much complexity as a result of being human and living in this physical, disabled body.”

Kathryn Tubbs, Artist
“As part of Colors of SM, I had the honor to be paired with Kaitlin K. as my Inspiration. Kaitlin has suffered with systemic mastocytosis (SM) for decades and only received her diagnosis 5 years ago. In getting to know Kaitlin and learning about her experience with SM, we talked about how hard this disease is to diagnose and treat since mast cells impact every organ of the human body. I was moved by Kaitlin’s dedication to create a happy life despite having a serious chronic illness. The painting I created depicts a round mast cell at its center within a square canvas, flipping the idea of a square peg in a round hole. My color choices of bright pinks and yellows were inspired by Kaitlin’s joie de vivre. I wanted to reflect the fullness of her life while still depicting the difficulties she faces in living with SM. Because the disease is so rare, Kaitlin has a treatment protocol that she carries with her for hospital and doctors’ visits. There is a layer of pencil drawing in this painting that is an abstraction of an LA street map, speaking to the desire for a map in navigating chronic illness and the difficulty in getting where one wants to go. The pink curves and yellow stripes in the painting are a reference to the game Chutes & Ladders to touch on setbacks in both living with SM and in navigating the healthcare system. To represent the impact of SM on women, I added a hot pink probe (definitely not designed by women). I am sure most women can relate to the trauma of being repeatedly poked and prodded in the pursuit of health with less research data or understanding on what ails us. The title, ‘Scream With Your Inside Voice’ speaks to the frustration that comes from years of advocating for oneself with your life depending on your ability to be heard and taken seriously when little is known about your experience. My goal with this painting was to depict all these serious issues with a bit of a joyful wink.”

We Are Already Together

Mixed media: plaster, silk, paper, roses, paint
Qaumaniq S., Living with ISM
“There is no ‘silver bullet,’ so I can stop looking for one and focus on quality of life and manageability of the disease. It has forced me to deal with my own mortality for 37 years now. As difficult as that is, it has taught me that our time here is finite and to cherish every moment. I’ve learned that, in life, there is both joy and suffering, and to balance the tension of the two within my hands.”

Mahwish Syed, Artist
“Paradise is a garden, and in that paradise, we are all already together. Qaumaniq S. is a gardener, and a deeply reverent soul. What she shared with me as we grew closer as fellow initiates into the divine mystery of our bodies was no less than earth-shattering. You see—living with systemic mastocytosis for as many decades as this inspiring and resilient woman has, you learn how to be your own gardener.

‘You must be your own gardener, cultivate yourself.’  My words are screen-printed on silk, a fiber that is both delicate yet incredibly tensile in strength, much like Qaumaniq. She cultivates from the inside out, afire with determination, radiant with love for her family, and alchemizing her pain into purpose.

Roses are known throughout history to be messengers of love. They have evolved for the past thirty-five million years and were so valuable that they were bartered with gold in the seventeenth century. I learned that we shared our deep love for roses and the peace that tending to them brings. That is why I added real roses that I dried myself to my art piece. They are ephemeral, much like our pain. I welcome you to add your own flowers to this ever-evolving display. Art doesn’t have to be precious, but an active part of your meditation.

Qaumaniq actively creates her beauty, her paradise. Even in the midst of excruciating pain. She is a flame-bearer in more ways than one. In her paradise, her garden, there is no separation between loved ones, between life and death, between love and pain. It is all part of that dark, fecund soil where she germinates her desires for unity. I used elements from my fashion and interior design to hybridize a new cultivar—one that celebrates both Qaumaniq’s fragility and strength.”

Strength & Fragility

Acrylic on canvas
Lisa C., Living with SM
“Living with systemic mastocytosis has been a journey I never expected—one that’s tested my strength in ways both physical and emotional. One of the most difficult consequences has been developing severe osteoporosis, which led to multiple fractured vertebrae. The pain, the limitations, and the constant recalibration of what ‘normal’ looks like have forced me to rethink everything, from how I move through the world to how I care for myself.

Lessons Learned:

I’ve learned that resilience isn’t always loud or heroic—sometimes it’s just getting out of bed, advocating for yourself at a doctor’s appointment, or finding a way to smile through the pain. I’ve also learned that being rare doesn’t mean being invisible or alone. I appreciate the connections I’ve made through the Colors of SM.

Strategies That Help:

Managing systemic mastocytosis requires constant vigilance. I’ve built a toolkit of strategies—working closely with specialists who understand the complexity of this disorder, physical therapy, proper medication, and pacing myself have become essential. But just as important are the emotional tools: leaning on support networks, practicing self-compassion, and allowing myself to grieve the losses while still celebrating the wins.

New Perspectives:

This experience has taught me to value the quiet victories—the days when I can walk a little farther, laugh a little louder, or simply feel like myself. It’s given me a deeper empathy for others living with invisible illnesses. I’ve come to see strength not as the absence of struggle, but as the courage to keep going in spite of it.

Systemic mastocytosis may have fractured my bones, but it’s also revealed the unbreakable parts of me—the ones that adapt, endure, and keep showing up.”

Jennifer Stumbaugh, Artist
“Connecting with Lisa C. and having the opportunity to create this piece has been one of the highlights of my year. Lisa’s warmth, honesty, and humor immediately draws you in, and I loved our conversations. She speaks about her challenges with SM in a way that is unflinchingly real… never sugar-coated, but still full of strength and optimism about the ways SM has shaped her, both physically and at a heart and soul level. Her family, above all, is the grounding force in her life, and her love for nature, the water, and the way she speaks about all these things, paints such vivid pictures in my mind.

Lisa and I discovered our shared love of peonies and being near water (among so many other things!) which became a guiding inspiration for the piece. I drew from the flowers and colors in my own garden and pond. The large peony represents both fragility and resilience: delicate petals a symbol of the body’s vulnerability, vibrant colors reflecting inner strength. The gold thread woven throughout the piece symbolizes the people, places, and connections that bolster Lisa and keep her strong. Strength doesn’t always look the way we think it’s supposed to.”

Up in the Air

Acrylic paint and tissue paper on canvas
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.”

Clouds Will Pass

Acrylic on board
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, or with every doctor who didn’t believe me, including 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, 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, and that like the clouds, this too shall pass.”

Daring Skies

Mixed media on canvas
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 dare not 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.”

Flight Path

Photography
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.”

A Light in Winter

Photography/watercolor
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.”

Splendid Sovereignty

Mixed media
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.”