By Lisa Sniderman, aka Aoede
No one plans for abrupt disruption in their life. No one expects to get diagnosed with a rare autoimmune disease six weeks before they’re getting married, while they’re working full time and about to go on tour to promote their new album. But that’s how it started, in 2008, when I was an environmental scientist and a singer-songwriter... How was I to know a few short years later that I would become a muse?
I’ve tried on a lot of hats in my years as an artist: singer-songwriter, storyteller, musician, playwright, actor, teacher, muse. Each hat I’ve donned has helped shape and define my ever-shifting identity. I'm also branded as "that girl who always wears funny hats... and carries a colorful cane."
I first put my muse hat on awkwardly in late 2005 when I was searching for an artistic identity. Aoede (pronounced (A-E-D) was the Muse of Song in Greek mythology, and I chose this name as a reminder to continually inspire and be inspired. Muse has resonated with me even more over the last few years and has become a central theme in my own life.
In 2008, I inexplicably was diagnosed with a rare autoimmune disease: Dermatomyositis (DM), a progressive muscle weakness disease that if untreated attacks and weakens my immune system and muscles. I’ve been dealing with the challenges of managing DM, trying to find the right combination of treatments, drugs, and therapies, since April 2008. The worst of it was a flare-up in 2010, when I was hospitalized for nearly a month with complete muscle weakness, then confined to a wheelchair and forced to undergo rehabilitation for many months.
From the time I returned home from the hospital, while physical and occupational therapists were coming to the house; while family and friends shuttled me back and forth to the hospital for infusions; while I was learning a new baseline and a new norm that involved wheelchairs, walkers, ramps, commode seats, and shower benches, I was trying to figure out how to get my music out into the world. I found myself in late 2010 and 2011 inexplicably retaining a p.r. firm, developing a new website, doing a photo shoot, taking up the ukulele, shooting a music video, starting my first blog, Dermatowhat?, engaging on social networks, recording music, and giving radio interviews.
All of this, except for parts of the music video shoot, I did from home — mostly from bed. If I had a crystal ball during rehab, I would have seen that in a few short years, I’d have released five albums, been considered for Grammy Awards, become a playwright, written and recorded three fantasy musicals (and staged two), been honored with more than 50 awards for my songwriting, audiobooks, and stage plays, and would have written my memoir, all while living with a chronic illness and disability.
Yet, when my publicity folks were fishing around for an angle in early 2011, I mentioned in passing that I wasn’t really doing live shows due to some “health” issues. “No performances? No tours? Where’s the story?” It took my pr.r.contact directly asking me that to make me realize just what my story was. Here's how he framed it: “So, you said you were in the hospital for 24 days right? Yeah. Wow. People who get heart bypasses are out in just a few days now. 24 days huh? And you’re releasing an album? All while going back and forth for doctor appointments and infusions and physical therapy?” I got it. As he asked the questions... as I blurted out of nowhere with certainty and passion, "Music is my lifeline!"... As the tears began to well up inside and finally spill out... I at last understood what I, Aoede, the Muse of Song, was here to do… I suddenly knew my story.
My story is persevering through this darkness called Dermatomyositis through the creative process. Music and art are my lifelines, and I cannot stop creating. But creating and expressing, donning my “Aoede” artist hat, doesn’t go far enough. I’ve discovered a yearning to be part of something bigger than myself.
My story, and my life’s purpose, is also about becoming a light in the darkness and a muse — offering support, compassion, inspiration, connection, music, hope, and encouragement to those who most need it. Only by battling DM could I have discovered my purpose. Only living with DM could I realize my need to give back, my need to write and share my story to encourage and inspire others who might also be going through illness, disability, or unexpected or unwanted life challenges and changes.
Helping others navigate through their own personal darkness has been and continues to be an important part of my own recovery. Here's what's wild: when I started sharing my story, it's as if I started attracting the very people who needed the light — some with DM, but also others! I found that when I allowed myself to be vulnerable, it opened doors for others to tell their stories, and it continues to help me to heal.
I recently shared some of my story about being an artist who uses creativity to heal on a social network, and it sparked a group of creative passionate musicians, artists, and authors who wanted to share their stories in response. I’m learning I can help others open their hearts just by bravely sharing my story and speaking my Truth.
Through years of rehabilitation, therapies, and treatments living with a chronic illness, I’ve created music and art as a healing path, becoming a muse to many in ways I never expected. I was unable to perform live shows for several years due to energy, stamina, treatments, and muscle weakness, so I began focusing on writing, recording at home, and licensing my music for film and TV. In 2012, I began writing musicals that I recorded on audiobooks as a way to keep my songwriter’s dream alive. Telling stories, creating recordings, and turning them into theater productions makes me feel most alive, purposeful, and deeply connected to others. This in turn helps me heal physically.
In 2016, when I had been living with DM for more than eight years, it hit me that aside from writing my blog Dermatowhat? on being a singer-songwriter with DM, a few years after being hospitalized, I had never really processed my illness; never let myself feel deeply the loss of independence from being hospitalized and rendered unable to move my muscles; never allowed myself to delve into the darkness, my twisting spiral staircase of a journey into chronic illness, and the vulnerability of sharing my weaknesses, that became my reality.
Instead, for years, I donned my artist persona, Aoede, and obsessively turned to creativity and expression as a healing path. I chose to publicly share the positive moments — the pretty pictures on red carpets at award shows, videos while recording albums, pics at the Grammys, and relentlessly pursued awards and recognition. But it's the stuff no one knows about — the skeletons and darkness that no one, especially me, wanted to talk about, — that I kept in my journals, logging my private thoughts and roller coaster of a journey since 2011.
In 2016, I finally wrote my story — my memoir chronicling my own journey battling and living with chronic illness. I shared my “secret” journal entries, and tentatively titled my memoir, The DM Diaries: Confessions of a Singer-Songwriter Living With a Rare AutoImmune Disease, and gave it to my editor. I realized, though, that sharing my secrets wasn’t enough. I had a higher calling as a muse. I needed to rewrite my book, challenge myself to go deeper, and share my journey of plunging into and through the darkness, through both confessions and life lessons learned, to inspire and encourage others going through something similar. I discovered that rewriting my memoir (which will be published in late 2018), and retitling it, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude, also helped me fully embrace my purpose and my path: being a light in the darkness.
I’ve lived with DM for more than 10 years now. Most days, I like to immerse myself in my place of joy: my creative world. I like to forget that I live with a rare disease. The reality is, DM is part of me, and without it, maybe I wouldn’t have started dreaming so big in the first place. Without DM, I never would have become a muse — a light in the darkness.
In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger — something better, pushing right back.
— Albert Camus
Lisa Sniderman, aka Aoede, is a 45-year old award-winning, quirky, folk-pop artist, playwright, teaching artist, and author from San Francisco. She combines expressive and teaching arts to inspire young adults and kids at heart to positively impact them. She creates and records unique, original full-length fantasy musicals on audiobooks that she adapts to musical theater stage plays.
She’s been honored with more than 50 awards for songwriting, audiobooks, and stage plays since 2012. Highlights include: Independent Music Awards Vox Pop Winner 2014; International Songwriting Competition 2013, 2012 Winner; John Lennon Songwriting Contest 2013, 2012 Finalist.
Lisa’s vision is to share how we become lights for others through our stories, music, and art at a special live (and online) performance and reading in December 2018. She’s seeking passionate artists, musicians, and authors who have turned to creativity to help them heal and who are interested in working with her towards a special “Lights in the Darkness” event, focused on shining their lights and the art of healing. If you’re inspired to participate, email Lisa to let her know how you’d like to contribute, whether through sharing your personal story through video or a live performance, and/or helping produce and organize the event.
Lisa’s memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude, will be released later this year.
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This article appears in:
2018 Catalyst, Issue 11: The Power of the Enneagram