88+ Ways Music Can Change Your Life, published by Keep Music Alive, is a compilation of over 150 inspirational stories & quotes from musicians, music educators and music lovers from all over the world. Included are a number of stories from Grammy winning and Platinum selling artists & composers. The authors have given Music In A Word permission to post contributions to the book and we are thrilled to present one below.
I am a 42-year old award-winning, quirky, folk, pop singer-songwriter, recording artist, performer and playwright from San Francisco. I have also been battling a rare auto-immune disease since 2008: Dermatomyositis (DM). I turned to music and art as a healing path and ended up inspiring others. My story is one of persevering through this darkness called DM by way of the creative process. Music is my Lifeline and I cannot stop creating! My story is one of being a light in the darkness and of sharing and connecting; first starting as a singer-songwriter and later becoming a Muse.
My Artist name is Aoede (pronounced A-E-D), which means “song” in Greek. Aoede was the first Muse of Song in Greek Mythology. When I chose the name Aoede in 2005, I wanted an affiliation with this particular muse as a reminder to be inspired and to continually inspire. This theme has resonated with me even more over the last few years and has become a central theme in my life. Due to life throwing me some unexpected curveballs, I have become a muse to many in ways I never expected: offering support, compassion, inspiration, connection and encouragement to those who need it most. By sharing my music and art and telling my own story, I have discovered others are inspired to tell theirs, and in many cases, pursue some passion or joy that’s inside their hearts.
Dermatomyositis is a progressive muscle weakness disease affecting stamina, energy, skin and muscles. If untreated, DM attacks and weakens my immune system and muscles, as well as, my mind and spirit. I’ve been dealing with the challenges of managing this condition, trying to find just the right combination of treatments, drugs and therapies, along with a slower pace and a lot of naps, since April 2008. The worst of it was a flare-up in 2010, when I was hospitalized for 24 days. I never could have guessed just how much music would play a role in my healing.
Part of my hospitalization involved 12 days of rehabilitation, which included occupational therapy. I recall one session where I mentioned I was a singer-songwriter and that I really wanted to play and sing again. The staff person brought in his kid’s guitar, and I remember how hard it was even for me to hold that small guitar. I tried singing my song “What You Got,” which was my anthem throughout this whole storm of a hospital experience. “When life is hurling lemons at you; when you’re so tired you can’t get out of bed; whatever life throws at you, you’ve got to pick yourself up and do what you can with what you got!” I wrote this song in 2010 to instill hope and encouragement in others and, I suppose, in myself as well. During this rehab stint, I could barely sing and play, but playing that guitar and singing renewed something in me. It was like, “I’m going to be ok. I will get through this. And this is what I’ve got right now to give…”
I have always instinctively turned to music whenever I needed it most! I remember laying in a hospital chair during my first IVIG (immunoglobulin) experience. Those God-awful florescent lights were glaring over me and I was thinking “Please God, let me get through this.” Why I was so freaked out, I cannot say. I did the only things I could think to do, I slowed my breathing and concentrated on each breath. I held my husband, Dave’s, hand. I let myself be in that yucky, medicated space because I knew I had no choice. And then, when my heart was racing so fast it felt like it was coming out of my chest, I began to sing. The words just came out. In retrospect, I guess it was the one thing I knew deep inside that would release me from that place of fear, from anxiety, from hospital space. I sang the first verse of a new song that I had recently written “If You Already Knew:”
What if you were born,
Knowing how your life would unfold
Where you’d skin your knees
When you’d see your first rainbow
What if you couldn’t choose
What you’d say or do
There’d be no surprises or waiting for signs
If you already knew
I couldn’t have dreamed up more appropriate words to speak to my heart. All I knew was I had to sing and I knew then, somehow, I would get through this. From the time I returned home from the hospital, I was trying to figure out how to get my music out into the world. This was my focus while physical and occupational therapists were coming to the house, 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 found myself in late 2010 and 2011 retaining a PR firm, developing a new website, doing a photo shoot, taking up 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.
Yet, when my publicity folks were fishing around for an angle, I mentioned in passing, I wasn’t really doing live shows due to some health issues; that I had been in the hospital and at home recovering. “No performances? No tours? Where’s the story?” It took my PR directly asking me 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 are 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, 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 because at last, I understood what I, Aoede, the muse of song, was here to do…I truly got it. I suddenly knew my story. My story is one of persevering through this darkness called DM using the creative process. Music is my Lifeline, and I cannot stop creating. Here’s what’s wild: when my story began to become public, 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 for me to be a muse in ways I had never expected.
I wrote the song Perfect Day in June 2011 after communicating with a bed-ridden fan that also suffers from a debilitating muscle disease. He is constantly in need of breathing support, yet finds empowerment and motivation through activities from his bed. When I first read his story, it brought me to tears. Then my muse started to flow and out came Perfect Day, imagining the world through his lens. What I realized is, it wasn’t just his journey I was lamenting; it was my own. It was the first time I let myself feel in song what I had gone through; to acknowledge my own limitations. I have since partnered with CureJM, the kid version of the same disease I have, to help raise awareness and to give back. I created a music video for “Perfect Day” that features CureJM warriors as superheroes, and have led a session on using art and music as a healing path at CureJM’s conference.
If I had a crystal ball in 2011, I would have seen that coming. I would have also known that in just a few years I’d have released 4 albums, been considered for Grammy Awards, become a playwright, written and recorded three fantasy musicals (staged one) and received over 30 songwriting awards for my music and art. I know now that I will always be using music and art to heal myself and inspire others to do whatever is in their souls. I’ve now lived with DM for seven years. Most days, I like to immerse myself in my place of joy: my musical world. I like to forget I live with a rare disease. The reality is, I live with DM and it is part of me and without it, maybe I wouldn’t have started dreaming so big in the first place. I try to show by example, that having a chronic illness doesn’t mean you can’t have dreams. Maybe they change from what they once were, but without a dream to follow, who are we really?
Aoede sings her song “Fairy Tale Love.”
Lisa Sniderman is a San Francisco based singer-songwriter performing under the name Aoede. “Award winning singer-songwriter Aoede is no stranger to overcoming obstacles and realizing her dreams” wrote Christopher Ewing, Metro Media Group.
50% of the proceeds from all book and ebook sales of “88+ Ways…” will be donated to foundations providing music instruments and lessons to schools and communities in need.