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.
feminismandreligion.com 
So sorry to hear of your suffering. “Ivy shall be well, Ivy shall be well, all manner of things shall be well.”
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I’m sorry Ivy. That sounds worse than my bad back. I find it frustrating when my body won’t do what I want it to, and I have to learn to extend compassion to myself as well as to others. But what else can we do? Rage doesn’t work, acceptance feels like “giving up”. What does our infirmity have to teach us?
I hope your ear heals and balance is restored soon.
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Ivy, I too suffer from a chronic stomach condition that has become worse with age and now will probably require surgery that may NOT improve the situation but may be required – your words really struck home because I have been struggling with the same thing:
” 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. ”
The way is to stay in the present, which is hard to when one has those bad days.Yesterday was a good day and I notice how deeply I appreciate the simplest things… so that’s the upside – For me, Nature is the balm.
I wish you well.
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It’s so sad to hear that you’re ill, but “living with it” might be the best path. I’m a chronic asthmatic, which can also be loads of fun. Let us just keep on, as they say, keeping on. Bright blessings!
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I very much appreciate both your style of writing and the situation you are currently struggling with.
I share similar symptoms, on top of which is added Tinnitus (a very loud ringing which drowns out all other noises) and a massive progressive hearing loss which has left me little choice but to learn sign language.
For me there is a fragile line in the stance in which I must assume simply to be okay with status quo. On one hand I DO NOT want to embrace victimization. Victimization, though it brings about ‘comfort’ on many levels, such as alleviating guilt, nurturing bitterness and justifies isolation, it simultaneous stunts growth and places in the epilogue of my life. It’s not my fault that I have this impediment, I didn’t do anything wrong, I don’t necessarily appreciate it, but nobody was asking. “Live with it,” your post said. That may sound like cruel and calloused advice, but it is the only compassionate approach. M Scott Peck, in A Road Less Travels, opening paragraph says that the moment we truly except life for being difficult, it ceases to be difficult.
The other side of the coin, like it or not, I AM different from my fellows. I can’t do things ‘normal’ people seem to be able to do without difficulty. Sometimes, I am embarrassed by my hearing loss and my lack of balance. I try to pretend I can hear, nodding at statements that have no idea what is being said. This is me trying to not be different. Not a good way to live life.
Accept status quo. Who know what tomorrow may bring? For you it may be being restored to your previous state of existence, perhaps not. For me it may bring total deafness. Who knows? I don’t.
But the truth is- people who have been afflicted with far worse impediments than what I am experiencing have done far greater things than I am doing (so far, I’m not done living yet).
And who’s to say what I am suffering with is a curse or a blessing? A matter of perspective. There is a story that I would love to share, but it is way too long for a reply. Maybe I will post it on my own blog.
Yeah, I’d like to be normal. In some regards. In other regards, I have no desire to be normal, average, mediocre… how ever you’d like to put it.
Sorry for the unsolicited advice- not really.
Live with all your might today- you’d be surprised of the lives you can touch by doing so.
Ron B
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Thank you for sharing this, Ivy. My personal struggles turn into research projects–my way of processing– and I have been so humbled and helped by reading in the area of religion and disability–I’m not implying all disabilities are illness. I share that in case you might be interested in that literature. Your struggle to hold hope and difficulty together is profound and moving. I wish you wisdom and strength in finding your way forward, whatever the circumstances. May you be held in love.
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Thank you, Ivy, for such a well-written, matter of fact, and frank essay about your lived reality. I feel blessed from your sharing such a personal story. I am also deeply touched by people’s responses to you as well. Having lived with a most difficult recovery from major hip surgery over these past 7 months, I have been reflecting on whether or not this is the new normal? And, if so, how do I, or any of us, continue to Keep On Keepin On? I too have struggled with the matter of hope. I believe that is what gets us through each day with whatever is in front of us.Thank you for sharing.
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I can understand your situation. I was suffering from pre-stage asthma and the worst part was that no one understood how it felt. Just don’t lose hope. Things are going to work out when you least expect it to.
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I was actually thinking about writing about living with chronic conditions since encountering my own as of recent. I myself waver between acceptance of this as “the new normal,” understanding how, when I walk in pain and not completely well but perhaps looking well if not a bit dejected on the streets, that it opens my eyes to humanity, that I might be walking by others, even when I am well, who are walking with physical pain that isn’t obvious, going through their lives the only ones in a crowd of strangers who knows it. It confounds a bit when doctors don’t know what is wrong and send you off on your own to deal with it because, even though something is very wrong, the basic set of tests rule out the obvious culprits. But aren’t sometimes, in the medical profession, on our own anyhow? We usually tell the doctor’s our symptoms, and there is a lot of guessing involved. If only humans would come with a more obvious detecting device that would scan our bodies and tell us all the complicated (perhaps) facts and direct us to a protocol that would be helpful, regardless of how certain or much. But it’s a little bit of established, traditional knowledge and then I suppose intuition and experimentation and then periods of resignation/rest/surrender accompany us the rest of the way. For myself, there have been days of determined searching for what might make me feel better, I’m like a scientist, albeit a messy, careless, erratic one, some days, internet searching for others with my symptoms and and their natural (hopefully) solutions. But then today, for example, I feel tired. Tired of being unwell, tired of popping supplemental pills, and just resolving to give up the condition, as if I could or at least myself as the doctor. But I only have the luxury of tiredness and abandon-ship-ment if I am not afflicted with worry that it is getting worse and turning into something else, and every cramp, ache, prick of my body in the place of focus spins me into a spiral of anger, panic, and hopelessness that I try my hardest to throw into distraction, calming myself, hoping that peace will keep my mental state from making it so much worse. And for my particular situation, I’ve been rather confused about how calming my body, when I can (usually it calls for hearing a nurturing voice of someone who has cultivated a therapeutic offering), takes what is very real and sometimes excruciating pain, chills, and nausea away for a time and then I can somehow sleep or go on with my evening. I find that anger makes it worse and even watching TV shows with characters of malicious energy start instant pain. I just don’t get it. But my emotions can’t make everything go away, and my condition is one that comes and goes, but never away completely. Anyway, this has become really long and I know it is my own experience which would not claim to understand yours, but I want to thank you so much for sharing and writing about it. I very much like it and completely get what you say about “a lesson in embodiment.”
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