For almost four years, I’ve been living with the long-term effects of an inner ear lesion. The lesion is long gone but its side effects are not. Throughout the day, I feel a combination of unsteadiness and sudden, unpredictable sensations of movement. On better days, the unsteadiness is almost non-existent and the feelings of movement are minimal. On worse days, I’m troubled with a type of brain fog that makes it hard to concentrate as well as disrupting unpredictable sensations of being on a boat that can’t pick one direction in which to move. It’s frustrating, tiring and demoralizing.
Summer is the season of worse days. There is really nothing I can do to feel better. Even staying well-hydrated and taking it easy often doesn’t steady the boat. So, instead, I often continue my life as normal. Then, I lay in bed at night and hope sleep comes soon.
When I first had the inner ear lesion the doctor offered me quite a bit of hope that I’d return to feeling like I did before. But as time has gone on, he has begun to shy away from such statements. I’m beginning to come to grips with the fact that this may just be a long-term condition. This realization, coupled with the symptoms themselves, cause me sadness, frustration and anger. I’m okay with this. However, what I’ve not been okay with is the loss of hope.
For me, it is the hardest part of coming to terms with this chronic illness because so much of me can’t imagine life without hope and change. In fact, as an ecologically-minded Jewish feminist, my lifework has its very foundation in the possibility of change and the promise of hope. Hope and change are at the very core of who I am and everything for which I stand. In so many ways, I can’t imagine life without hope.
As a matter of fact, as I’ve said so many, many times in this blog: a better world is possible. We know that to be true. While we aren’t there yet, change is on the horizon and our collective hope propels us forward.
So, I live with a chronic illness that seems hopeless while I preach hope and change. The paradox is not lost on me. However, just because my situation has an element of permanence to it, doesn’t mean the same is true everywhere. Clearly, social constructions were created and therefore can change.
Children should not be separated from their parents. No one breaks the law by seeking asylum. Black lives matter. Anti-Semitism is wrong. So, is patriarchy, sexism, environmental degradation, domestic violence, rape, classism, ageism, transphobia and homophobia.
However, none of these are eternal. They are human-created institutions, human-created policies and most importantly human failures. That means change is possible.
Recently, I was speaking to someone about my symptoms trying to explain where I was at mentally. He said, “So, you live with it.” That’s how I feel: I live with it. I’d never heard someone capture exactly how I feel so accurately.
Some days are better. Some are worse. I’m still working on how to take it one day at a time and listen to the limitations of my body. Every day is a lesson in embodiment. I’m determined to also make every day a lesson in justice.
Ivy Helman, Ph.D.: A feminist scholar and faculty member at Charles University and Anglo-American University in Prague, Czech Republic where she teaches a variety of Jewish Studies and Feminist and Ecofeminist courses. She is a past Associate of Merrimack College‘s Center for the Study of Jewish-Christian-Muslim Relations and spent many years as an Adjunct Lecturer in their Religious and Theological Studies Department. She has taught at Boston College and Carroll University in Wisconsin. While her primary focus is Judaism and Roman Catholicism, her research interests range from the relationship between anti-modernism and anti-feminism in religious traditions and the rise of various fundamentalisms to queer theology and eco-feminism. Her publications include: “Queer Systems: The Benefits of a More Systematic Approach to Queer Theology,” in CrossCurrents (March 2011) and Women and the Vatican: An Exploration of Official Documents (2012). In addition to teaching and research, Ivy spends time learning Czech, painting, drawing, creating new kosher vegan delicacies and playing with her dog, Mini, and cat, Gabbi.