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Lisa Sniderman`s book A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude is a memoir of her life as an artist with dermatomyositis, a rare autoimmune disease. Using her artist persona, Aoede, the Muse of Song in Greek mythology, she greeted songs informed, winning multiple awards, until sidelined by her illness. The book is the story of her return to life and art, learning to create as an artist with a chronic illness and disability. Her struggles will be familiar to many with chronic illness, as well as an inspiration to continue to chase your dreams. I interviewed Lisa by email about her life, the book, and the new artists’ community she has founded.

Please tell us a bit about who you are.

I am an award-winning singer-songwriter, artist, playwright, author and filmmaker from San Francisco, California and I have a dermatomyositis (DM). I have persevered for more than 11 years by obsessively turning to creativity to express and as a healing path. But my story and my life’s purpose is also becoming a light in the darkness and a muse.

You have dermatomyositis (DM). How does this affect your life?

DM is a rare 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 since April 2008. In 2010, I was hospitalized for nearly a month with complete muscle weakness due to a flare. I then underwent rehabilitation for many months (and years) to relearn the basics such as how to sit up, then how to stand, and how to walk and eventually how to sing and play my instruments again.

The hardest parts of living with DM are acknowledging and accepting that I have limitations; coming to terms with the fact that I am not in control of my body anymore. I struggle with my identity as a disabled artist and am still learning not to base my worth on my achievements. I like to say my life is firmly cast in jello… meaning that my heart may be into something, but I have to wait and see what my body will do on a given day, so it is hard to make commitments. I don’t think people that don’t have chronic illness understand the isolation or what it is like to not be out in the world every day.

I create, record, and share my original musicals, art and music – mostly from home with limited energy – to express and to heal. Each day I am dream chasing, meaning that I check in on where I am in relation to my next dream and do new things to move me forward.

What inspired you to write your book A Light in the Darkness?

When I had been living with DM for more than eight years, it hit me that I had never really processed my illness; never allowed myself to delve into the darkness. Instead for years, I donned my artist persona, Aoede, and created bright, uplifting, quirky pop songs to counter the darkness I was living with daily. But I’ve discovered a yearning to be part of something bigger than myself and to affect change. Helping others navigate their own personal darkness continues to be an important part of my own recovery.

My memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude, spans 10 years battling and making peace with chronic illness while creating to heal, to speak to and inspire those struggling with chronic illness, disability, and unexpected life challenges (and those who love them). It is an inspirational story of the healing power of music and creativity, following your dreams and finding your true purpose.

How has DM changed the way you work as an artist?

I refused to let my singer-songwriter dreams die because of DM. Instead, I created new dreams or found ways to keep old ones alive. I started writing, recording from home and creating musical stories on audiobooks. Since 2010, I’ve released five albums as Aoede, created three award-winning, full-length fantasy musicals on audiobooks, and then adapted two of them to musical theater stage plays. Creating-writing, playing music, singing, is my place of joy and flow, where time seems to stop, and I don’t dwell on being sick. I feel most alive and deeply connected to others when I’m creating and sharing my art.

It isn’t that DM totally changed how I work; it is that creating helps me heal while battling and making peace with my DM. Creating reminds me that I am not my illness – that I’m an artist at my core, that I still have worth, value, contribution, and identity. Sharing my art and music gave me connection, purpose and meaning;

You founded a Facebook group for artists — singers, writers, actors, etc. — who have chronic illness. Why and how can people join?

I realized I wanted most to collaborate with other artists who were creating to heal. In May 2018, I put out a call to passionate musicians and artists who have also turned to creativity to help them heal to collaborate on a special “Lights in the Darkness” event in December 2018, focused on shining our lights and the art of healing. I was so overwhelmed by interest and offers to participate that I started an online Facebook community: “Lights in the Darkness-Creating to Heal,” which has grown to almost 200 artists.

In December, I produced two related events in collaboration with more than 50 artists: “Lights in the Darkness – Conversations on Creating to Heal,” an online video showcase featuring interviews and stories with 45 artists.

My vision is to share how we’ve become lights for others through our stories, music and art. Through doing what we do, we help others who may be battling something similar. When we allow ourselves to be vulnerable, it opens the door for others to share their stories.

People can join the growing community to connect, share art, stories, music, inspiration, and resources by going to the Facebook page.

What are you working on now?

Keep Shining Recording and Documentary

Before the closing of the live show in December 2018, we came together as a group and sang a new song I wrote for the event called “Keep Shining,” intended for those who may want to give up. I collaborated on a new recording of this song where the community recorded and contributed their individual voices. I just completed the recording, which features more than 20 voices. I’m now working on making a music video for it and will collaborate with the ‘lights in the darkness’ community for artistic contributions.

“Keep Shining” (and “Lights in the Darkness”) also sparked a new feature documentary by the same name: “Keep Shining: The Art of Healing,” This film is in its beginning stages and will center on the relationship between illness, creativity and healing.