I CREATE TO HEAL
I’m Lisa Sniderman, and similar to many of us living with chronic illness, for 10 years I’ve been living and dealing with the challenges of managing a rare progressive muscle weakness autoimmune disease, dermatomyositis (DM) that if untreated attacks and weakens my immune system and muscles, trying to find the right combination of treatments, drugs, and therapies. The worst of it was a flare-up in 2010, when I was hospitalized for nearly a month with complete muscle weakness that rendered me unable to move, then confined me to a wheelchair and forced me to undergo rehabilitation for many months to relearn the basics such as how to sit up, then how to stand, and how to walk. My story is persevering through this darkness called DM by obsessively turning to creativity to express and as a healing path. Along my twisting spiral staircase of a journey into chronic illness, I did everything I could to avoid delving into or dwelling in my personal darkness. Instead, for years, I donned my artist persona, Aoede, the Muse of Song in Greek mythology, and created bright, light, happy, uplifting, positive, feel good, childlike, quirky pop songs and full-length fantasy musicals melding mythology, magic and music, to counter the darkness I was experiencing and living with daily.
PHYSICAL AND SPIRITUAL TRANSFORMATIONS
As I‘m sure many of you can relate, my first transformation was physical during my darkest days with DM, when I could no longer move my muscles, and my life changed forever in an instant. I went from complete independence to total dependence, and for many months, required home care from bathers, physical and occupational therapists; relied on family or friends to shuttle me each month to the hospital for infusions, and learned a new, slower baseline that involved wheelchairs, walkers, canes, ramps, soft food, daily shakes, and shower benches. My body waged war on me, and took a steep toll: 156 doctors’ appointments; the roller coaster of endless drug cocktails and their nasty side effects; recurrent infections, constant fatigue, and the need for rest, which was never restorative; the relentless routine of physical therapy and rehab sessions.
My second transformation was spiritual, questioning my purpose, my identity, my faith, my contributions, value, and worth as a person, let alone as a disabled artist. Perhaps it was along this path that I discovered music and art are my lifelines, and I cannot stop creating. But my story, my life’s purpose, and perhaps my most significant spiritual transformation, is also becoming a light in the darkness and a muse, offering support, compassion, inspiration, connection, and encouragement to those who need it most. When life throws us curveballs; when we’ve lost our inspiration because of a significant change in health status, and when we live day in and day out with a chronic disease or disability, it’s tempting to want to give up our dreams, to play the victim. It’s easy to succumb to discouragement, self-pity, or even despair. But dreams and significant health challenges aren’t mutually exclusive. I’m a living example. We can live with hope, passion, and joy, even if the shape and substance of our dreams have changed. We can live well with chronic illness! (See my Life Lessons.pdf for some strategies!) “When life is hurling lemons at your face… when you can’t get out of bed… you got to do what you can with what you got,” as I wrote in 2010 to instill hope in myself, and to encourage others who were encountering unforeseen challenges. This song became my personal anthem during my darkest days, and renewed something in me as I relearned to sing and play it during my rehabilitation (Checkout “What you got” Performed at Myositis Association (TMA) Conference in Las Vegas, 2011, or on Itunes
A LIGHT IN THE DARKNESS
While enduring chronic illness and years of rehabilitation, therapies and treatments, I’ve been so fortunate to have attracted healthy relationships, positive role models and cheerleaders, supportive family, friends, and fans, and to be filled with joy, love, gratitude, and a positive attitude. As early as I could, I wanted to give back. So, like my artist persona Aoede, I too have become a muse to many in ways I never expected. In 2011, I felt a pressing need to share my story, to use my experience and gifts as a singer-songwriter to help others who were also fighting DM. After being at my lowest point physically and emotionally in 2010, I wanted to remind them their dreams didn’t have to die just because they were living with chronic illness. In September, I shared my story and performed for The Myositis Association in Las Vegas, Nevada. People later came up to thank me for sharing songs such as “If You Already Knew,” and to tell me what kind of impact I had on them. It made me realize how significant being there was and helped me see the kind of inspiration and light in the darkness I could become to the very people who needed it most.
In 2012, I told my story and performed for Cure JM (Juvenile Myositis) to inspire the kids who share the same disease as me, during which some of the moms commended me and told me I‘d given them hope and optimism for their children’s future. In 2013, I found myself wanting to honor these Cure JM warriors in a special way, so I decided to create a music video for a song I wrote in 2011, “Perfect Day,” that included pictures and drawings from Cure JM kids to give them the gift of seeing themselves as superheroes. I wrote “Perfect Day” after communicating with a bedridden fan who also suffers from a debilitating muscle disease, envisioning the world through his lens. I later realized it wasn’t just his journey I was lamenting; it was my own. It was the first time I let myself acknowledge my own limitations and feel in song what I had been going through.
I’m yearning to share my story and use my unique experience living with chronic illness while living my dreams to encourage and inspire others-especially those experiencing transformations: illness, disability, or unexpected life challenges. Helping others navigate their own personal darkness continues to be an important part of my own recovery. I’m learning that the acts of creating and sharing my story, music or art can also inspire others to live their dreams, open their hearts, empower them to share their stories and help them heal. Perhaps I’m only now realizing that DM has been a gift in disguise, and that without it, I never would have embarked on this transformative journey and discovered my own gifts and true calling.
Learn more at aoedemuse.com