Friday, January 11, 2019

Lisa A. Sniderman on Finding Light in the Darkness of Dermatomyositis (DM) | A Chronic Autoimmune Disease

In this interview, Lisa A. Sniderman talks to Alexander “The Engineer” Lim, host of AuthorStory by alvinwriter.com, about her book, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude.



“Who are you at your core? That part doesn’t change, even if something happens to you.” ~Lisa A. Sniderman

Lisa’s stage name is Aoede, a muse from Greek mythology and it was one which she selected so she would be reminded to be “continually inspired and to inspire.” She has been involved in music since the early 2000s and describes herself as a folk-pop artist who is also into young adult music and audio books which can be converted to stage plays.

A Light in the Darkness sprang from her experience, since April 2008, of living with dermatomyositis, a degenerative, inflammatory muscular disease whose symptoms include skin rashes and which causes muscular weakness and attack the immune system. At the time, she was six weeks away from getting married and was about to go on tour to promote her first album, and the last thing she expected, when she went to a dermatologist for a skin rash, was to be diagnosed with a serious illness. She was initially in denial, but she had no choice but to confront her condition when, in 2010, she was hospitalized for muscle weakness and subsequently confined to a wheelchair while she underwent months of physical therapy.

Lisa says her story is one of persevering through the condition by using creativity to heal and manage it and has realized that it can also help others heal and persevere through their own difficulties, disabilities, and life challenges. That said, the book sprang from her realization that she hadn’t fully processed her condition personally, instead, hiding from it behind her persona, and that personal processing produced the book as well as an understanding of who she was, now that she could no longer act the way she used to.

Lisa remarks that, in those times when she is “in flow,” she doesn’t have to focus on her condition, and this is why she enjoys the creative process. She admits that her journey is a “roller coaster,” as the condition flares up every now and then, and notes that, while we do not have any choices on what is thrown at us, we do have choices on how to act and react. As such, she chooses to focus on love and gratitude, noting that it isn’t always easy to do so and that such focus affects her relationships with the people around her and the community she is a part of, including her husband.

Where attitude is concerned, Lisa notes that she has more compassion and has incorporated her spirituality in her life more now, compared to before she was diagnosed, when she was always on “go, go, go,” mode. She learned compassion during her hospital stay after seeing fellow patients who were in just as bad a situation as she was and felt blessed because she knew she would recover, whereas the patients were unlikely to do so.

Where creativity is concerned, Lisa was still trying to find her sound and voice when she was diagnosed, and after that she had more vulnerability in her work, as she was able to tap into things which she experienced, directly or indirectly. Lisa herself only realized recently that the material she was creating was related to the journey of healing that she was on, giving as an example the protagonist of one of her own plays, which reflected the struggles that she, herself, was undergoing at the time.

Part of Lisa’s journey included a desire for her to collaborate with other artists to heal, and her invitation resulted in a play, Lights in the Darkness, which was a collaboration with some 35 artists from all over the world. Lisa admits that this would likely not have happened had she not have made herself vulnerable enough to share her own story, and she reflected that she didn’t expect the reaction that she did when she first sent out that invitation.

Lisa notes that she has had many life lessons come out of her experience which she wants to share with others. Some of these lessons are: where you are and who you are is enough; never stop dreaming; and always keep shining your light.

Purchase from Amazon: A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude by Lisa A. Sniderman