What is ‘fierce joy?’ That’s the question we posed to Dr. Ellen Schecter about the meaning behind the title of her memoir. “Fierce joy,” she responded, “is not a tepid, easy, saccharine type of happiness. It’s something that comes up out of harsh moments. It’s honey from the rock; it comes from loss and pain, from small events and valuable people. And it burns like a flame despite grief and dread; it’s something that comes from going through very harsh moments.” These are the words that describe how Schecter chooses to live despite two life-altering and painful autoimmune diseases.
This journey of discovery will be the subject of the Chesapeake Forum Author Series Wednesday, March 22, 10-11:30 am, titled Fierce Joy: A Medical Mystery, Spiritual Adventure & A Love Story.
If Ellen Schecter’s name sounds familiar, it’s because she had a successful career as a writer, producer, and educator on various award-winning TV series for children, including “Reading Rainbow,” “Allegra’s Window,” and “The Magic School Bus.” She’s also published more than 20 children’s and young adult books that went on to win awards or became Book of the Month selections.
At the height of her career, Schecter was diagnosed with debilitating Lupus and the rare and life-threatening CIDP (chronic inflammatory demyelinating polyneuropathy). As a way of coping and because she is a writer, she began keeping a notebook of what was happening to her, questions she was asking her doctors, emotions she was experiencing, and people she came in contact with. These ‘scribblings,’ which helped her understand how to maneuver through this new reality, became the basis of her memoir.
Fierce Joy, the book, is moving and raw as Schecter candidly shares her struggles with illness and the toll it took on her and her loved ones. However, the heart of the book lies in her exploration of what it means to truly heal and find inner peace and acceptance. In her words, we experience the stages of awareness as she realizes that the disease, not one’s body, is the enemy and that even though she couldn’t control what was happening, she had a choice about her response. “You don’t have to be knocked around by your disease, symptoms, and treatments. You can decide how you want to live.” That choice also meant finding comfort and healing, even when a cure was impossible. “I learned to be sick without suffering,” she says, “by dealing with my illness with the maturity of an adult woman, no longer cowed by the fears and attitudes of a small child.”
Schecter looks forward to sharing what she’s learned and, more importantly, how she learned it. She will probably explain how, despite the challenges, she was determined to live with purpose. “You have to find meaning. For me, the meaning was my wanting to live a happy life. I didn’t want to linger over being sick. And so I looked everywhere for ways to do that.”
She met other people who exchanged, what she calls, ‘the secret handshake of illness’ and taught her how to maneuver through the medical maze of symptoms, medicines, and doctors. “At each juncture, there was always somebody who reached out, either with a hand or a hint or with something that helped me along the way.”
Sometimes those decisions involved her doctors. “Just like you can choose your doctors, you can fire them if they don’t give you what you need, emotionally, psychologically, or medically. I’ve done it. It’s an important way to give power back to yourself when you’re feeling powerless.” She advises creating a cooperative, problem-solving partnership, going to the appointments with a list of questions and problems, and making sure your doctor listens.”
Spirituality, which surfaced after her diagnosis, also plays a vital role in Schecter’s life. “Letting go of the fear of death was important for me. It was like releasing a cannonball and picking up a balloon instead. I have a very positive attitude about death. And I’ve also learned to live for today and not ten years from now.”
Living in the present means Schecter has had to deal with anger or other unwanted emotions. She manages them by allowing herself 10 minutes of expression, whether breaking dishes, crying, or throwing a tantrum. She’s learned other ways to cope: “At your lowest moment,” she said, “the best thing you can do is reach out and do something for someone else. Because it will lift you, so you are not wallowing in this dark, deep place that I call the pit.”
There is so much more that Schecter wants to tell you, and the Chesapeake Forum Author Series is the perfect opportunity for her to do so. You can expect insights and reflections on her experiences, including the nature of healing, living with purpose, and how to find fierce joy.
The discussion will be an inspiring and enlightening event for anyone struggling with an illness, challenged by the aging process, or simply seeking a deeper understanding of the human experience.
Fierce Joy: A Medical Mystery, Spiritual Adventure & A Love Story Wednesday, March 22, 10-11:30 at Easton YMCA To register for the event, go here. https://site.corsizio.com/c/6393bf8c37c937a7d8cee437/register For additional information: Chesapeake Forum https://chesapeakeforum.org Fierce Joy, by Ellen Schecter, is published by Greenpoint Press and available wherever fine books are sold.