“Scream with your Inside Voice”
Kaitlin Kindman
Los Angeles, CA
Indolent systemic mastocytosis (ISM)
Twist: 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
Hawthorne, CA
www.ktubbsart.com
@ktubbsart
“Scream with your Inside Voice”
Acrylic, Ink and Conte a Paris on canvas
36” x 36” x 1.5”
$1,000
Artist Statement: As part of Colors of SM, I had the honor to be paired with Katy Kindman as my Inspiration. Katy has suffered with Systemic Mastocytosis (SM) for decades and only received her diagnosis 5 years ago. In getting to know Katy 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 Katy’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 Katy’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 little known, Katy 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 Shoots & Ladders to touch on setbacks in both living with SM and in navigating the healthcare system. Because SM mainly affects 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.