By: Lynne Schwartz
I helped organize a medical conference last fall where one of the workshop leaders introduced me to the song “Never One Thing” by May Erlewine, and it immediately struck a chord with me (pun intended).
According to songfacts.com, Erlewine said that “The song ‘Never One Thing’ was inspired by the Walt Whitman verse: I am large, I contain multitudes. It is a song about personal revolution and accepting and caring for all parts of ourselves. It is both a triumphant burst from the confines of society and a plea to be released from the captivity of labels and generalizations.”
The song starts out:
“I’m the underbelly, I am the claw
Never one thing no, not one thing at all
I’m a street fighter, I’m a prayer for peace
I’m a holy roller, I’m a honey bee
I am the truth, I am a lie,
I am the ground, I am the sky
I am the silence, I am the call
Never one thing no, not one thing at all”
The dichotomy in the lyrics resonated with me, as I thought about my now adult daughter, who has lived with a chronic, invisible illness for over thirteen years. Having walked alongside her throughout her journey, there are some things I have noticed.
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There is a desire, no a need, for people to understand the challenges of living with medical problems that cause constant, unpredictable and often debilitating symptoms. With this understanding comes the opportunity to support, to extend grace, and to help ease the burden of your friend or loved one. Those that try to understand offer a gift to those living with chronic medical conditions.
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Chronic illness does not define you. Every human is unique and complex, with special characteristics, traits, talents and skills. While an illness may be a part of your life, it is only one part, and often not the part that you want to highlight. Breaking away from preconceived notions of what it is like to live with a medical condition is only one of the challenges these individuals face.
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You can change the story that is being told about you. I middle school, my daughter had the label of “the girl who passes out all the time,” and she didn’t like it. As an aspiring fashion designer, she started to put an effort into what she was wearing to school, which also helped distract her from her struggle. Over time, she became known as “the girl who always wears cute outfits.” She was both a girl with chronic illness and one with hopes and dreams, and she used fashion as a way to change the story being told about her.
My daughter just happens to be Haley Schwartz, the founder of Vertige Adaptive, a fashion-forward clothing brand for women who use medical devices and live with chronic illness. Haley learned early on that she couldn’t change her illness, (not for lack of trying), but she could change the narrative of her life by focusing on other things about her that were interesting, like being known for her sense of style.
Vertige Adaptive has made it their mission to empower women to take back their story. They offer clothing with discrete features, like interior pockets for ostomy bags and monitors, hidden openings for feeding tubes, and easy access for things like ports and picc lines. Believe me, there is nothing wrong with having a medical device in plain view, but the choice of if and when to do that should be yours to make. Vertige Adaptive allows women to share what they want, when they are ready.
The challenges that come with living with a medical condition or illness can be overwhelming, but I have never met anyone stronger than someone walking that path. For those of you on that journey, remember that you can feel weak but still shine bright. As the song says:
“I am hope, I am defeat
I am broken, I am complete”
