I forgot to grieve
Have you ever forgotten to grieve? I’m an award-winning artist known as Aoede, playwright, author and filmmaker and have battled a rare chronic illness, a progressive muscle weakness autoimmune disease, dermatomyositis (DM), for more than 12 years while obsessively creating to express and to heal. But, during 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.
I recently discovered I’ve emphasized my physical wellbeing above all else, over my emotional and even my spiritual health. Muscle weakness, debilitating fatigue, lack of stamina, depletion of energy, decreased mobility… aren’t those all physical symptoms? When doctors diagnosed and treated me, they offered prescriptions for immuno-suppressive drugs and referrals to physical therapy. When I was in the hospital for nearly a month with complete muscle weakness during a flare of my DM, the treatment was rehabilitation, then more physical and occupational and speech therapy, all to get my body working again. I spent five days each month August 2019 through March 2020 at the hospital receiving infusions to help my body thrive. But where was the rehab for my soul? The therapy, the prescription for my heart?
Creating and sharing-my music, musicals, stage plays, films, audiobooks, and my book-became my obsession and my salvation. But they were also my escape. I could hide behind my artist persona, Aoede the muse of song, to avoid and camouflage the darkness I was living with every day. I didn’t have to confront any of my difficult feelings and instead, I could live in my place of joy, imagination and in fantasy worlds of my own making that had nothing to do with my day-to day reality or my disease. Yes, creating has been instrumental for my healing.
But I forgot to grieve. Or perhaps, I didn’t ever realize I needed to grieve an illness. After all, I didn’t lose someone I dearly loved. I wasn’t facing bouts of depression or suicidal tendencies. I simply became the muse, Aoede, inspiring others, in all parts of my life. So for 12 years, I never fully allowed myself to process and feel because it felt better to simply create, express and share me – outside my illness – through my art and music.
And I forgot to grieve. In truth, I did lose someone I dearly loved… me. I’m not the same person I was before DM took my identity and independence and introduced me to a whole new kind of vulnerability: months and years of grueling rehab, relearning to sit, stand, walk and eventually play and sing again; more than 237 doctor appointments and endless therapies, infusion treatments, drug cocktails, and unwanted side effects.
I could hide behind my artist persona, Aoede the muse of song, to avoid and camouflage the darkness I was living with every day. I didn’t have to confront any of my difficult feelings and instead, I could live in my place of joy, imagination and in fantasy worlds of my own making that had nothing to do with my day-to day reality or my disease.
A few years ago, I realized that creating, expressing and donning my “Aoede” hat didn’t take me far enough. I discovered a yearning to be part of something bigger than myself; a need to give back and share my story to inspire others. Being a light to those who also struggle and helping them thrive gives me purpose, value, contribution, identity and continues to help me heal.
Except, I forgot to grieve. Which means I potentially missed crucial and transformative stages and steps in my own healing process. I skipped many of them, and perhaps significant opportunities to heal my mind, spirit and body along the way. I jumped straight to the practices like creating before ever really letting my illness in. I forgot to put on my own oxygen mask first before attempting to put one on those around me. Writing my memoir, even sharing my story, allowed my analytical mind to process what had happened. But processing is not the same as feeling. And my heart needed to do the same.
I saw an opportunity through music to heal and empower myself and others, who may have also forgotten to grieve, so I created The Grieving Project, a powerful spoken word musical audiobook that sets the stages of grief to music. Four young adult characters (including me) with four different chronic illnesses plunge through 14 stages of grieving and thriving, through a melding of words and an emotional orchestra, taking us on a moving journey from surviving… to thriving.
I adapted seven 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. I invited myself 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.
I forgot to put on my own oxygen mask first before attempting to put one on those around me. Writing my memoir, even sharing my story, allowed my analytical mind to process what had happened. But processing is not the same as feeling. And my heart needed to do the same.
And just as I allow myself finally to open my heart, and let the feelings out, a pandemic strikes and dismantles the very fabric of our world and shakes all of us in it, reminding me how fragile, how connected we are. And the 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…
Now more than ever, during these unsettling times, when hope and healing are necessary on so many levels, we need to continue to find ways to thrive. But first, we need to grieve… our losses, our unwanted changes, our transformations.
Grieving and thriving do not follow not linear timelines; they are a roller coaster with myriad twists and turns, and an intense jumble of simultaneous physical, mental, emotional, and spiritual feelings and reactions. They’re two sides of the same coin that shift and change with each flip. The stages will never tell us what or how to feel, or when to feel it. They are never cyclical. Pain, sadness, fear, apathy, confusion, despair, frustration, anxiety, even contentment, joy, love and peace, can never be expected to follow tidy, chronological order. I believe when we experience grief, we desperately crave some sort of road map. Our muddled minds need to cling to anything that claims to show us just how to stop the pain from our unexpected and unwanted loss; to understand and make sense and order out of our unfathomable, unprecedented transformations. And sometimes, we have to get out of our heads and just let ourselves feel; to believe what and how we are feeling is normal; that the storm will pass; that we are not alone.
What can you do when you struggle with an illness or disability that doesn’t go away? You can deny it. You can suffer from and live in fear of it. You can scream at it and demand to know why it’s there. You can come to terms with it. You can feel sorry for yourself. You can make friends with it. You can learn to live your life with it. You can grieve. And perhaps if you grieve, you can awaken, express, rejuvenate, activate, connect, shine and thrive, not only despite, but because of it.
RARE. Talk with MSU: Grieving Rare Illness – Did you forget to grieve?
Watch my Award-Winning “Keep Shining” Music Video
Before the closing of my live show in December 2018, performers came together as a group and sang a new song I wrote for the event – Keep Shining – an expressive anthem inspired by artists’ stories, a vital reminder to never give up. While I voiced my inner fears, doubts, questions and insecurities, our live performers kept repeating the chorus to “Keep Shining” as a powerful, uplifting counterpoint. I collaborated with our ‘lights in the darkness’ community, where more than 20 artists contributed their voices. The animated video is inspired by my own story and transformations struggling with rare chronic illness – dermatomyositis, disability and recovery.