With so much pain, loss and hurt in the world; currently on a global scale due to the ongoing Corona Virus pandemic, but also just in general in the lives of millions of individuals from all walks of life, sometimes what can really help is knowing you’re not alone, or finding a source of advice and inspiration that can motivate and encourage you to keep going, to find strength when you think you have none left, and to realise that you can get through the difficult and painful periods of your life.
All these things are the inspiration behind the new project from multi-award-winning artist Aoede, AKA Lisa Sniderman who has suffered from the rare chronic illness dermatomyositis for many years. The Grieving Project, a multi-media spoken word album and audiobook, has been created to help others through the seven stages of grief – regardless of what is causing or has caused the hurt and pain – and onto the 7 stages of thriving. PW caught up with Lisa to find out more about the creative process behind the project, what she wants those who discover it to take from it and what she’s working on now.
Tell me a little about The Grieving Project please. How long did it take you to create, from inception to finished product? Not taking into account the Corona Virus crisis, why did you feel that now was the right time to create and share it?
The Grieving Project is a unique, inventive spoken word audiobook that sets the stages of grief to music to help us move from surviving to thriving. The entire audiobook, all 22 tracks, is spoken over original musical compositions. Four characters with four different chronic illnesses plunge through 14 stages of grieving and thriving, through a melding of words and an emotional orchestra, and take us on a moving journey from surviving… to thriving.
I’ve lived with a rare chronic illness, a progressive muscle weakness autoimmune disease called dermatomyositis, for more than 12 years while obsessively creating to express and heal. I realized only recently, that in all this time-through creating albums, musicals, films, even writing my memoir and adapting it to an audiobook, through hospital stays and monthly infusions, and recently running a two-week online summit I planned over a year to help others with chronic illness thrive, I forgot to grieve. Or perhaps, I didn’t ever realize I needed to grieve an illness.
In The Grieving Project, I’ve invited myself to grieve and thrive; to express and feel in all the ways I’ve intentionally avoided, and from my own experiences, created seven new stages of thriving that pick up after grieving. And I realized I had an opportunity to heal myself and others. That through music, I could reach others who may have also forgotten to grieve. The Grieving Project is a road map to our hearts, an invitation for you and your loved ones to grieve your loss, your change, your unexpected and unwanted transformation, and the inspiration and encouragement you need to awaken, express, rejuvenate, activate, connect, shine and truly thrive!
The concept for the project came about at one of my monthly IVIG – gamma globulin – infusions during the Fall of 2019. I played “Keep Shining” an animated video for a recording my Producer Scrote and I created, that shares my story and struggle with illness and disability and my recovery, for an infusion nurse, and she told me that my video and song can help patients get in touch with their own feelings around their illness that they may not be able to otherwise access or be aware of. The impact of that stayed with me and sparked my Project. In December 2019, I had this idea that I shared with Scrote that I called “Thrive.” All I knew is I wanted to share my feelings and emotions around my story and help others access and process their loss from illness. The concept I shared was to create a spoken word audiobook comprised of 14 tracks: 14 stages of grief and thriving: I pulled and adapted 7 stages from renowned psychiatrist Elizabeth Kübler-Ross, including: shock and denial, pain and guilt, anger, bargaining, depression and reflection, testing and reconstruction and acceptance and hope, and then created 7 new stages, inspired from my own journey and all the interviews I conducted with other artists creating to heal and experts in the chronic illness field. From inception to finished product, it took our team from December 2019 through August 2020 to create and release The Grieving Project.
I focused solely on crafting all the spoken lyrics, while my producer, Scrote, composed and arranged most if not all of the music – more information and other credits can be found on the Project Page. Scrote worked with members of Orchestra Nostalgico, based in California, where he recorded pieces of the ensemble at a Bay Area studio over a few days in late June, while social distancing, and then later invited special guest musicians, who recorded remotely. I was unable to participate in the studio recordings due to health and risk and recorded and edited all of my vocals from my home studio. I also recorded scratch tracks for all the voice over actors to have a template to follow during June and July. The Project was due to be recorded March 30th in the studio, but recording dates had to be pushed back due to COVID until late June.
As for why I’ve chosen to release this now; my mission, path and purpose all revolve around fostering healing by inspiring and helping others to create, share their stories and thrive, especially those who also struggle with chronic illness. I spent a year interviewing 60+ expert speakers and creating a free two-week online summit How to Thrive With Chronic Illness and Limited Energy, that I hosted and ran July 10th-24th, 2020, which had 1800 participants. Interestingly, during my interviews, not one expert mentioned grieving as an effective coping strategy for dealing with chronic illness. I believe that grieving our loss from illnesses is important for our mental, emotional, spiritual and physical health, and imagine that like me, so many living with illness haven’t acknowledged their loss, transformations or unwanted and unexpected changes. I am hoping by sharing this now, The Grieving Project can help others with illness who have also forgotten to grieve. It is a natural next step for me, since as an artist, I create and share music and art to help heal myself and others. My last audiobook, released in July 2019, was an adaptation of my memoir sharing my story: “A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude.” I suppose writing my book, creating my audiobook, summit and now The Grieving Project are actionable ways I can be a light in the darkness to others who most need the light. Further, in the United States, seven out of 10 people live with chronic disease, so it is a big population of people who might benefit from inspiration, encouragement, and being empowered to grieve so that they may move from surviving to thriving-including the many who are in hospitals now. I’d love to work with hospitals and other health organizations and have partnered with MSU – Myositis Support and Understanding – to help facilitate.
As a sufferer of dermatomyositis, was it always your intention to have some of the proceeds from this project donated to a non-profit that helps those suffering with myositis, or did that idea come later?
Having lived with dermatomyositis, a form of myositis, for 12 years, improving the lives of those living with myositis is near and dear to my heart. It was always my intention to have proceeds donated from The Grieving Project to a nonprofit to help those struggling with chronic illness, but the idea for MSU came while I was running my summit. Before my summit started, I decided to add live talks, both to accommodate additional speakers, and to engage the Facebook group during the summit. I didn’t have any help, and on the first live call, Jerry, founder of MSU, who I had scheduled as a live talk and knew by reputation, jumped on and volunteered to help – not just with that live talk, but with all the live talks in my summit. I chose MSU because they demonstrated that they go above and beyond to support their members, as well others in need, and do so with enthusiasm, determination, compassion and passion. I also was seeking a partner who wanted to help share The Grieving Project with their members, hospitals and other organizations, and I believed it was a great fit because MSU emphasizes the importance of mental, emotional, spiritual and physical health and recognizes how art and music can be an opening to help us process grief and loss from our illnesses.
TGP was created with the help of three other actors who provide the narration and an artist who like you, all suffer from a chronic illness. Could you tell me a little about how you came to work with the four of them?
I created three other characters which I voice myself, to go through this range of emotions and stages, and pulled from my experiences interviewing other artists who battle illness to create Danica who has MS, Charli who suffers from EDS/POTS/MCAS and Brandon who has anxiety, depression and PTSD. The specific diseases they face weren’t as important to me as underscoring the emotions that all of us dealing with chronic illness face. It was important to me that the actors who voiced my characters could authentically speak to the emotions because of their own experiences dealing with chronic illness.
My producer knew and reached out to Rachel Fulginiti, a known VO actor/audiobook narrator who voiced Danica. Rachel shared that her attraction to the Project stemmed from childhood trauma and a 10-year struggle with infertility, and noted that pain and struggle births growth and compassion. I reached out to Lauren Freedman, a voice actor, writer, podcast host, to voice Charli after being featured on her podcast, Uninvisble, as I knew she was a VO actor living with depression, anxiety and other autoimmune diseases. She noted she was drawn to the Project because it spoke to her heart. I reached out to David Francisco, who voices Brandon, after hearing him on another podcast I was also on, Jessie Ace’s DISabled to ENabled podcast. In 2016, David, an accomplished singer-songwriter, musician, producer, author, was paralyzed from the waist down by a distracted driver, and lives with chronic pain. He said he was drawn to this Project since it has to do with suffering and finding your way through it.
Additionally, I wanted to work with Jasmine Raskas, the artist who designed the album cover, who has faced many life altering complications of Ehlers-Danlos syndrome – EDS – for many years. I was immediately drawn to her painting on the album cover – originally titled “Entanglement” – to embody The Grieving Project: the spirals, the play of light and dark, the bold colors and textures, the messiness, the frenzy, the expressiveness. I asked Jasmine to integrate into her painting, 14 elements representing the 14 Stages of grief and thriving. She responded by painting her grief: 14 individual paintings! Each one expresses in paint one of the 14 Stages. Then, she shrunk them to fit on the painting. What I also love is that The Grieving Project wasn’t limited to the spoken word and music, but extended and crossed into the visual art!
Emotional and physical trauma can affect us all in many ways whether it be through chronic illness or living through a pandemic as the world is now. Some might argue that such two things are in no way the same, but others will say that they are. Where do you stand on the matter, and would you agree that this project is more than suitable for other individuals as well as those struggling with an illness of some kind?
Grieving, for me, deep mental suffering-an emotional reaction to change- is about acknowledging all the inner feelings that arise from loss or transformation or unexpected changes. Whether that loss is due to chronic illness-e.g., loss of identity, activities, ability to travel, increased isolation, changes in perceived contribution, value and worth, etc., physical transformation, such losing a limb or eyesight, or sparked by or revolving around unexpected and unwanted changes, such as the pandemic, the feelings-the emotions inside us that we turn to as humans to process these changes-are the same. I believe for that reason, The Grieving Project extends beyond those of us struggling with chronic illness and our loved ones, because so many right now are grieving.
This pandemic that has struck has dismantled the very fabric of our world and shaken all of us in it, reminding me how fragile, how connected we are. And grief continues to pour in. Isolation. Quarantines. We grieve for our families, our friends, our changed world, our normalcy, our lack of control, lost jobs, loss of personal connection, lost freedoms, lost lives… so what started as a project to grieve my illness transformed into creating during COVID through grief, and grieving and finding meaning through creativity… especially today, grieving is such an important part of our healing on so many levels. The stages of grieving that we go through are universal, regardless of what internal/external factors brought on the grief. Also, I believe this Project can help others who don’t live with chronic illness to have empathy for those who do. Lastly, whether you are going through an illness or not, grieving can help us heal, and the spoken words and music can be an opening and invitation to process loss, especially for those of us like me, who have forgotten to grieve.
The seven stages of grief are fairly well known but what exactly are the 7 stages of thriving? How do the two coincide on the album?
As mentioned, I adapted the stages of grief originally from Kübler-Ross for this Project, which are presented as: 1-Shock and Denial, 2-Pain and Guilt, 3-Anger, 4-Bargaining, 5-Depression and Reflection 6-Testing and Reconstruction and 7-Acceptance and Hope.
I created 7 new stages of thriving based on my own journey and experience interviewing artists who also battle illness, as well as all of the 60+ experts I interviewed for my How to Thrive summit: thriving artists who battle chronic illness, alternative practitioners, spiritual teachers and healers, creative – art, music, drama – therapists, thought leaders, medical and mental health professionals, online support communities, people struggling with chronic illness, caretakers and loved ones, who shared thoughts, strategies, effective practices, tips, inspiration, support, services and resources. I realized that there were key strategies and practices around topic areas relevant to those of us dealing with chronic illness and loved ones, like meditation, mindfulness, yoga, exercise and movement, nutrition, diet, music and art therapy, medical treatments, spiritual, holistic, integrative healing practices, as well as the importance of creating, connecting and community.
I considered how I might think of them in terms of key stages on the road to thriving and came up with seven new stages: 8-Awaken, 9-Connect, 10-Rejuvenate, 11-Express, 12-Activate, 13-Shine, 14-Thrive, and then lyrics to fit these stages, like Rejuvenate Stage 10 Tell Me What to Eat, which speaks to how it feels when presented with so many, often conflicting, choices around diet and nutrition.
In my audiobook, though grief is not linear and not sequential, as demonstrated by the messy spiral in the album artwork, the stages are presented as separate and sequential, meaning of 22 total tracks, tracks 2-12 deal with the 7 stages of grief and then tracks 13-23 focus on the stages of thriving, leading up to Stage 14, which is track 23, Thrive). Many times, we used two different tracks to have two characters voice different experiences with that stage, such as Tracks 10 and 11, Stage 6 Testing and Reconstruction, where both Danica and I share our different perspectives through I Chose You and Scattered Pieces.
What do you most want listeners to take from the audiobook when they hear it?
I am inviting and empowering listeners to access and grieve their own losses – whether they stem from illness, transformation or other unexpected changes – to help them move from surviving to thriving. I would find it rewarding if a listener simply listens with an open heart and is just aware of and acknowledges whatever feelings come up for her or him on her or his own journey with loss and transformation, understanding that grief is never linear. Also, I believe listening “in order” isn’t what is important, as different stages may speak to different listeners. I’ve already been told that it is the kind of album that really benefits from multiple listens, going back to re-listen to tracks that may have sparked some raw emotion in the listener.
The Grieving Project has been out for a couple of weeks now – how have you found the response to it so far? Have you seen or been sent any particular messages or comments from listeners that have genuinely touched you?
So far, it has been amazing. I recently had an online release event August 31st called “The Grieving Project Revealed,” where I invited my producer Scrote, and Rachel and Lauren, and a few other folks from our team, including MSU, and we shared about the Project, their roles and experiences as well as what went into the making of, and how dealing with COVID help shape it. We also played snippets of audio tracks. It was great to have friends and fans on Facebook watch, engage and share positive comments and support.
The Grieving Project is also up for consideration for Best Spoken Word Album in the Grammy® Awards, so right now, hundreds of Academy members have been listening, and many have given me positive, encouraging feedback. Some particularly touching messages include: “The Grieving Project is a love letter to your soul, giving voice to those thoughts and emotions that we all feel, but sometimes don’t express,” and ”raw, painful, and deeply poetic.” I’m most moved when someone shares her/his personal story with me after listening with an open heart, like a listener who relayed his father had degenerative ALS and experienced many transformations I described in my lyrics. He expressed that he got a glimpse of what might have been going on in his father’s head, and how his father may have processed the stages of grief. That was very impactful for me. Another listener conveyed that he too didn’t ever grieve his illness, and that this Project was a catalyst for him to do just that.
Would you like to see more such projects like yours in the music/audiobook market in the future? Given that people immerse themselves in music and art in different ways, would you agree that more works like this can only be beneficial in terms of the positive impacts they can or could have on those who listen to them?
Absolutely! I come from a musical theater background, having created and recorded three full-length fantasy musicals on audiobooks – Is Love A Fairy Tale? 2012, What Are Dreams Made Of? 2013 and Do You Believe In Magic? 2015) – something that very few, if any artists are doing. I love being a musical audiobook pioneer of sorts. I will continue to create them and would welcome more musical audiobooks in the market. Yes, I agree that there are numerous positive impacts. For example, one mother shared with me that after listening to What Are Dreams Made Of, her pre-teen was inspired to start writing a play and creating her own songs.
I loved that The Grieving Project really pushed me as an artist outside my comfort zone in a good way, as I am used to writing lyrics and melody, and for this focused on crafting all the lyrics and on bringing my authentic experience to my performance-in other words, letting myself really feel the heart of the emotion in each stage.
Now that this project of yours is out in the world, what’s next for you? Have you started thinking at all about a follow up audiobook/album or are you just enjoying knowing that something you’ve worked so hard on and is so personal to you is out in the world to help others?
I am already working with Scrote to co-produce and release a companion instrumental music album to be released ideally later this year, featuring a selection of just the music from The Grieving Project. Then we have plans to ideally record and release in 2021 another related spoken word Grieving Project, using the music from this Project, but inviting special celebrity guest artists to share their personal stories around surviving to thriving. I also will be exploring adapting The Grieving Project to a musical over the next year, as not only is writing musicals my passion and background as a playwright, but I feel that it could work very well to give these four characters a story, backstories and songs… whether it becomes a production for a virtual online stage or live theater – or a hybrid – remains to be seen, but to make it accessible and reach people who also live with chronic illness, I would likely want to create a virtual production. I also will be looking at planting seeds for writing my next book around the topics of how to thrive with chronic illness and grieving, likely in 2021.
More information on The Grieving Project as well as purchase links can be found here. You can also keep up to date with Lisa by following her on Twitter. Header photo credit: Steven Gregory Photography.
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