Providing Hope for Others After Devastating Personal Tragedies
In 2012, I was at the height of my career, headlining at Chico’s House of Jazz; a premiere venue in New Jersey for jazz artists. It was a sold-out show. The love of my life and husband, Joe, was by my side when I gave a performance to remember. My dreams were becoming a reality. Two days later I lost everything when our son Dustin died unexpectedly.
My son and I were blessed with a pure love of the arts. I’m a professional jazz singer and an artist. As a young adult, Dustin was an emerging filmmaker. His dream was to create and direct his own films. He envisioned himself as the next David Lynch, an internationally respected surrealist filmmaker.
Dustin’s penchant for the surreal also came in another, more sinister form. He suffered from a rare disorder, Body Dysmorphic Disorder; something I had never heard of. Dustin would say to me, “I wish I could like the way I look, but I just can’t.” Blessed with crystal blue eyes and high cheekbones that others might envy, my son was not only talented, but truly a beautiful person inside and out. But that was no comfort to Dustin because he simply could not see what I, or others, saw. Irrational thoughts prevented him from being social and actively pursuing his lifelong dreams.
Body Dysmorphic Disorder is still a relatively unheard-of condition, but the anxiety it causes sufferers is all too real. Under-recognized by mental health professionals and insurance companies, Body Dysmorphic Disorder is a mental illness which causes sufferers to obsess and worry about any flaw in their appearance. Invisible to anyone else, the ‘flaw’ they see can soon become an all-encompassing obsession.
Added to that incessant anxiety, Dustin was heartbroken over a complicated divorce. He was not capable of finding his way out of his depression. He could not go on living another day like the one before and grew tired of trying to fit into this new era of glamour media. In his world, he was dying of embarrassment. His only answer was to relieve himself of the pain. He took his life.
When my son committed suicide, complicated and overwhelming grief left me stuck. I was consumed by guilt, wondering if I could have done something to prevent my son’s final decision. No one should ever experience the deepest sorrow of a mother who outlives her child. I had lost my way, had no purpose and wanted to join him.
A Series of Tragedies
After some time passed, I willed myself to be brave enough to move beyond the despair, to dig deep inside myself for answers, and to give myself the “permission to be me” again. One month later, despite my painful loss, I was determined to move forward when a trip to my favorite bagel shop turned into a nightmare. Out of nowhere, a car jumped the curb, careening into my vehicle. First responders needed the “jaws of life” to extract me from the car before I was airlifted—with multiple life-threatening injuries– to a hospital, where its Level 1 Trauma Center team stood ready to save my life. I remained in the hospital for five weeks, and then went to a physical rehabilitation facility for another six weeks before returning home. I didn’t know if I would walk, talk or sing again.
I knew the dangers of the “why me?” syndrome. I worked hard to push that self-pity notion out of my healing process. That was a challenging part of my journey. Angels have been by my side as I gradually worked my body and soul to mend. My physical injuries eventually healed, and I began rehabilitation with a personal trainer – a good friend and neighbor who donated his time to help get me back on my feet.
In what would be the third, in a string of life altering tragedies, in November of 2013, I was diagnosed with a stage 4 glioblastoma and was told I had 18 months to live. A particularly aggressive type of brain tumor, glioblastoma will typically take a patient’s life in a matter of months. This was devastating news that I could only deal with by, once again, focusing my energies on the core values – life, love of family and friends, hope, and faith.
I began chemotherapy but soon stopped, believing it would kill me faster than the cancer. My husband Joe vowed “cancer will not win” and soon got to work, studying everything, and calling doctor’s worldwide to learn more about genomic sequencing, our last hope. I embarked on an experimental treatment protocol, and four years later, my cancer is still in remission. I owe my life to the team at Sloan Kettering Cancer Center. The study that I was fortunate to be a part of produced very promising results and was widely covered by the media, including a TIME magazine article in March 2015 and cover article in August 2015
Finding Purpose and Strength
Miracles come in many forms, allowing you to crawl out from under the rubble and to fly above it. God has tested me, but somehow, I’m still here. I decided there must be a reason. And to that end, Joe and I founded, The Bungalow Foundation, a 501(c)3 not-for-profit whose core mission is to help cancer patients and their loved ones reduce adverse physiological and psychological health issues through music and the arts. We believe that engagement in music, visual arts therapy, movement-based creative expression and expressive writing is not only comforting, cheerful and supportive, but also promotes wellness and healing.
I have been a jazz singer and an artist for most of my life. As my difficulties mounted, before and during the cancer, it was tempting sometimes to set aside those things that might seem superfluous or trivial in the face of ongoing tragedy. But I found that the pursuit of art – both making it and absorbing it – gave me a sense of purpose, and reminded me that, despite all our trials, life remained a wondrous, beautiful, and mysterious thing.
Today, we want to pass that message of healing hope through the arts on to others. The Bungalow Foundation provides Packages of Hope consisting of arts-related items curated by me and tailored to the needs and interests of the recipients. They might include painting, musical, photographic, or writing supplies or software; professional instruction in one of the fine arts; video equipment; tickets to theatrical, musical, or dance performances; and other components. In addition, The Bungalow Foundation also arranges trips to child-centered performances and exhibitions for groups of youngsters battling childhood cancers and other conditions.
I believe I survived for a higher purpose for now I am dedicated to sharing these life lessons, so I can help save others who are suffering. I went through a period of despair, but with my newfound purpose, I eventually found the courage to start writing my own songs, and I am painting again for the first time in thirty-eight years. I know firsthand how using your gifts – in my case, art and music – can slowly lift you out of hopelessness. I am living proof that immersion in music and art therapy can save lives.
Joe and I have been through so much together. I felt a strong desire to share our story with others. Together, we wrote a book, Through Fire and Rain, our story of deep loss and salvation found through love, prayer, and faith in the future of medicine. All the proceeds from the sale of the book support the efforts of The Bungalow.
I now understand in my heart that life is not about focusing on the bad things that happen to us, rather it’s how we handle them, and whether we can learn something from them. Sometimes you must be broken down to your very core to find grace, resilience, endurance, and valiance!
I never would have thought of myself as a strong woman, but after my two brushes with death, I now embrace the fact that I have what it takes to make a change. If not all at once, then a little at a time. There’s a lot of wisdom in the adage “one day at a time”, and now, with my newly acquired mission, I can live that philosophy. It continues to take a brave heart to honestly transmit my colors and emotions, and now I have the courage to do that.
TheBungalow.org is structured and operated as a small, “close-to-the-ground” organization with the barest minimum of overhead. MaryAnn and Joe personally fund many of the efforts however, the needs are many and resources limited. For individuals who would like to support their efforts, please visit TheBungalow.org
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