Life was humming along and it was good. I was happy as wife, mother of two amazing kids, small business owner, equestrian competitor and writer in an advanced fiction program. Every thread of passion from each role was in sync with my crazy-fun, busy life. I had it all . . . on the surface. Then, in 2005 I was diagnosed with an autoimmune disease—thankfully not terminal, but also without a cure. After an ego-shattering struggle, I retired from our marketing and advertising business, let go of our new greeting card company and basically was confined to bed.
My new catch phrase was ‘thrown off the merry-go-round’ and I sat and watched while each of the components that defined my identity spun past without pause. I was still a wife and mother but the illness consumed me and I felt cheated, lost, alone, and defeated. I became one of the nearly 45% of Americans with chronic, invisible illnesses. Without the convenient distractions of a busy life, I had first-hand knowledge that being in control was a mere illusion.
Ironically, the theme of our greeting card company, BeThereInk, was about the necessity of being present and in deep connection with those we hold dear. I believed I was fulfilling that philosophy. Looking back, I now realize that my focus was primarily external. I’ve come to see how much of my daily life was influenced by society’s expectations, the past and the great what-ifs, and measuring my worth by comparison and accomplishment.
The National Wellness Institute defines the six components of wellness as physical, social, intellectual, spiritual, emotional and occupational. The impact of my illness was spread across each of these dimensions. The loss of the physical, occupational and social aspects derailed my intellectual, emotional and spiritual health. The debilitating fatigue, flu-like symptoms, joint pain and blurred vision erased reading and writing. Most all things that used to seem ordinary—like going to the grocery and picking my kids up from school—became obstacles.
The other moms in my daughter's dance class didn’t understand why I looked the same but was suddenly unreliable for car pool. Or, why for years I relentlessly planned to participate only to cancel hours beforehand. Then there were the well-intended comments about how lucky I was not to have to get up and go to work every day. To be fair, it is difficult to understand another’s experience without ‘walking a mile in their shoes.’ The loss of function combined with my agonizing guilt, grief, anger and growing confusion were ingredients for big trouble.
I sat and watched while each of the components that defined my identity spun past without pause. I was still a wife and mother but the illness consumed me and I felt cheated, lost, alone, and defeated.Tweet It!
To avoid serious depression I had to begin redefining my identity by simply being rather than doing—not by generating an income, landing a new client, or a ribbon in the show ring. The first step was deciding to view my illness as a journey. I learned to believe in the saying that when one door closes, a new one(s) opens. A few years in I met and bonded with a spiritual mentor who became a close friend. I discovered art and was blessed by art angels—experienced artist friends who taught, listened and still provide steady encouragement. It would be nice to say it was as simple as overcoming illness through art, but the path to becoming an artist also revealed less than stellar qualities that had been easy to deny. I’d always considered myself as accomplished and capable but I had nowhere to hide, from myself or the countless blocks and resistance to the myriad challenges of being an artist.
Every setback and dilemma provided startling perspectives on my deepest self and the self I wanted to become. Instead of the person who sends a card to a suffering friend, I became the friend who showed up, able to anticipate others’ needs. I recall my son saying that he was sorry I was sick but glad because I was always there for him. The details and nuances that we shared deepened my relationships with my son and daughter. My husband, who couldn’t have been more supportive, grew right along with me. I believe I’ve traveled light years ahead of who I might have become without this disease. My path to wellness was lined with self-awareness, empathy, understanding and emotional and creative growth.
Life as an altered artist has been abundant with extreme joys along with falling down the rabbit hole a few thousand times. Though chronic illness is still a constant companion, my health has improved thanks to a clinical trial. I’ve learned to stop before crashing, save energy for an important outing and I optimize my physical health with a clean diet and a lot of sleep. And most of all, I can spot a negative thought a mile away, be kind to myself and understand that while I don’t live a ‘typical’ life I have created a better one, with a renewed strength, love, depth, and creativity. Becoming a visual artist has helped me form a new, stronger voice.
Before I got sick if someone had told me that I would have art hanging in galleries and people's homes I would have laughed and easily blown them off. Now, with my kids grown and my husband still running the business, my routine is shaped around studio time, creating daily and seeing art in the everyday details made possible by living in the moment. I can walk right by a sink full of dirty dishes, a laundry basket and table other chores if I’m in creative flow.
Twelve years later I really do have it all, and in abundance. I volunteer with On The Move Art Studio, a local grassroots group that takes art to underserved kids. Working with these children has ignited a new sense of purpose, for which I am eternally grateful.
Poet Rainier Maria Rilke said, “There is only one journey, going inside yourself.” Truer words were never spoken. I can honestly say that my life was good, but now it's great.
Patti Edmon is an artist and writer from Lexington, Kentucky, mother of two amazing young adults, two dogs and a rescue cat. She lives with her husband Jim in a historic foursquare with a fully renovated art studio on the third floor, where she spends many hours. Her art and writing have appeared in publications and gallery exhibits. I’ve been a guest blogger on the National Chronic Invisible Illness forum. Find her on Facebook and Instagram.
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