For years, I’ve been asked “How did you get started making pillows?” I never told the real story for fear of judgment. However, in 2017, after seeing the award-winning film “UnRest”, a movie about one woman’s struggle with Chronic Fatigue Syndrome, I realized that sharing my story was important and might help others never give up.
I started creating pillows after I got sick. Very sick. I was 34, working in nonprofits, married, and a mother to a 5-year-old son. In 1994 on Thanksgiving Day, just 3 months after I received my Master’s Degree, I went for a jog to train for a half-marathon. Afterward, I took a long nap. When I awoke, I knew something was terribly wrong. I was not able to move. My body was wracked with pain. I have never been the same since.
For weeks I dragged myself to work only to collapse in bed from exhaustion on the weekends. I started going to doctors. I went to one, then another, and another, desperate for answers. They didn’t have any. I tried to manage the symptoms of crushing fatigue and mental fog, but within 5 months, I had to quit my job because the cognitive impairment was so profound I could not read an office sticky note.
I later learned I was struck down with ME/CFS, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ME/CFS is a complex multi-system disease characterized by extreme fatigue, cognitive dysfunction, and other symptoms, that severely impair patients’ ability to conduct the activities of daily living.
I was bedridden for the next 5 years. I had to stay in a dark room, have no sound, and could not read or watch TV. I could barely talk. It was the most frightening time in my life!
Thankfully, I am married to the most loving husband, who not only worked full time, taught English in the evenings, and took care of our son, but he also took care of me.
I am not sharing my story publicly for any sympathy, for I am one of the lucky ones. I’m part of a very small subset of 2.5 million Americans with ME/CFS, who gradually feel better over time. Not cured, but better. As you can see via my website and social media, I live as normal a life as possible within my limitations.
In 1999, I began to turn the corner and gain some strength. I started making pillows as a creative outlet. I believe that because I was so sensory deprived, the simple act of working with textiles rich in color and texture, gradually brought me back to life. It felt healing to make something beautiful.
My husband and I both saw how making pillows and immersing myself in art and design, was actually making me healthier and stronger every day. Together, while I was still very sick, we started Deborah Main Designs in 2004 as a vehicle to sell my pillows.
Yet, I am still one of the #MillionsMissing due to ME/CFS. Missing from normal daily life and a prior career. Recently, in May 2023, I made a pillowcase for the Millions Missing National Advocacy Day in Washington, D.C. to help bring more public awareness and national funding to this devastating, unpredictable disease.
To learn more about this debilitating disease and see hundreds of pillowcases designed by people like me with ME/CFS, and others far worse, please visit MillionsMissing.org. Read their stories, as so many people across the world are still bedridden, suffering, and missing, and we need your support.
I would not be where I am today without the love and support of my husband, my family, my friends, my colleagues, the art and design communities, and YOU. Thank you for reading this. I hope my story in some way inspires you to be more loving to someone who is sick, never take your health for granted, and demonstrate how art and design are an important part of healthy living. xo Deborah