Here at My Body Does, we’ve always been fascinated with our relationships to our bodies. The media tells us again and again that the #1 way we relate to them is through how they look. We think there’s a lot more to it than that. Our bodies are not just objects by which we judge our worth (though we often do exactly that), they are also subject. They breathe, move, nourish, experience pain, pleasure, joy, sadness. We’re constantly presented with narrative of how ‘bodies are’, here we explore the spectrum of ways that ‘bodies do’.
This inteview with Rebekah came out of the newest lens we’re using to explore this relationhip — a lens that centers on health as a spectrum of experience that critically affects the way we relate to and live in our bodies. Rebekah offers incredibly thoughtful insight into what it means to be healthy. Though each perspective is unique, we expect many will find themes that resonate with them in Rebekah’s reflection.
MBD : Do you have a definition or a way to explain your experience of health?
I love this question, because I don’t hear an interrogation of the word “health” from very many corners of my world. Instead, I think we typically assume the word “health” is one concrete, agreed upon idea — like the comment people make when they are expecting a new baby: “As long as it’s healthy.” And we all nod, like, “Yes, absolutely, we know just what you mean, and of course we agree — ‘as long as it’s healthy.’” But what does that mean? As long as this baby scores within the normal range on the Apgar test? As long as it doesn’t have eleven fingers? As long as it doesn’t have to stay in the hospital longer than the average two days post-delivery? As long as it doesn’t have Down syndrome? As long as it doesn’t grow up to have depression? Or is it as simple as wanting a baby that will live to adulthood? A baby that medicine can keep alive? And what happens if it’s not “healthy”? Is this the worst thing we can imagine? I don’t bring this up because I want to argue that people are wrong or right for picturing any of the above scenarios as the definition of “health” — my point is that the term is actually quite hazy, even when we pretend it isn’t. It can mean so many different things, and yet, we use it as a catch-all term to describe The Best Case Scenario and the Highest Priority of human life.
I’ve been quite “sick” since I was fourteen months old and have been paralyzed almost as long, so my perception of “health” might be a bit jarring to people with bodies that have so far managed to dodge hospitals and diagnoses. Because of the malignant cancer found on my spine when I was practically still a baby, I’ve spent years of my life in hospitals, on medications, in surgery, under sophisticated medical machines, etc. Because of a multitude of factors (side-effects of chemotherapy and radiation in childhood, genetics, general wear-and-tear unique to paralysis), my body is a bit of a mess. The specifics are boring, but essentially I take a little heap of medications daily and see about seven specialists regularly to keep this body of mine functional.
I think one of the consequences of these primary and consistent experiences with “ill-health” has been an unflinching understanding that we are all dying — a fact that is grim on its face, but also grounding once you’ve had a chance to swallow it and feel it run through your body. For me, understanding that the deterioration of my body is inevitable means that the threat of sickness is no longer the main point. Instead of trying to bat off the inescapable decline of my body, I pay more attention to how I am going to go about the business of living. In other words, to me, health is less about the avoidance of diagnosis, hospitalization, medication, and much more about the richness of whatever version of living I have available to me. When something new goes wrong with my body, there is always a sense of loss and adjustment. And when I’ve made it through that dark tunnel, the next step is always finding a new approach to make my way in this body. I don’t want to minimize the difficulty of this adjustment process — it can be brutal — but I cannot overemphasize the reckless resilience we possess as humans — the unimaginable capacity we have for adaptation. And this ability to find a way to live has been my experience with health.
MBD: How has that definition changed overtime and were there things happening in your life that contributed to that change?
I don’t know that my understanding of health has necessarily altered over time, but it has been challenged and strengthened. When I was younger, my paralyzed legs meant that I was different than others, and I felt that difference in a variety of ways, but it was normal to me — I knew how to use my unconventional little body to do the things I wanted to do. Dragging my legs (instead of walking) across the living room floor only felt weird when I knew I was being watched by someone who thought it was weird. In this sense, I suppose I was primed to understand physical health as a relative idea.
When I made it to my twenties, however, I started to receive a new diagnosis every few years. As it dawned on me that my bladder and kidneys and cardiovascular system and thyroid and bowels and central nervous system are at best unpredictable and at worst screwed, going about the business of life felt harder, in both tangible and intangible ways. The concrete adjustments feel more manageable to me — I’ve adjusted to life on a lot of medications with their own fun side-effects, eventually I’ll need a kidney transplant, and back pain flairs from nerve damage can stop me in my tracks for days, but I always adapt to new expectations, new rhythms. The harder piece is recognizing that I have a body that offers no guarantees. Sometimes late at night or on a long drive home, this thought can swallow me. But here’s the thing: none of our bodies come with guarantees. All we’ve got is averages — averages that change as medical advances expand — and how many people actually land right on the red dot, anyways?
MBD: We have these pretty binary ideas of healthy vs. sick in the way we talk about health. Do you feel like there’s a clear point in your experience when you would say you transition from healthy to sick, or vice versa?//How does your relationship with your body change as your health changes?
Despite the confidence in my voice when I describe my theories on health, my perspective on the status of my own health is still in constant flux. I have grown familiar with tides of resentment and gratitude for my body. Every time I learn about a new part of my body that isn’t working as well anymore, I am so frustrated.
For example, last summer I had a bladder infection that lasted for months. My doctor kept throwing antibiotics at me, and my bladder kept burning and clenching. Finally, my doctor sent me to another doctor who decided to put a scope into my bladder and take some pictures. He handed these printed images to me — pink circles covered in stretches of searing red like pictures of Mars taken from outer space — the lining of my bladder. “Well, you definitely have interstitial cystitis,” he said. This is a bladder condition that involves very specific dietary restrictions and, in all likelihood, a lifetime of painful flair-ups. He prescribed me another medication to help manage the symptoms of a bladder that gets inflamed and cranky from something as innocent as salad dressing with a splash of vinegar.
At first I was livid. Does the universe not realize that I already have a few medical issues on my plate? I couldn’t believe I was supposed to start a new fight when I was juggling a circus of brawls that had already left trails of scars across my body. But I started taking the medication and learned to be a bit more mindful of the substances I put in my body and I adjusted to a life with a bit more pain and, in the end — it’s counterintuitive, but I’m left with this hyperawareness that I have a bladder, and while it doesn’t work just like those bladders who can handle buckets of vinegar without a shudder, my wounded bladder looks like a goddamn celestial orb, and it’s doing its very best for me, and, while I’m thinking about it, so is my pounding heart and wonky kidneys and webs of veins and nerves and pink spongey lungs. And honestly, when I’m reminded of the work they have to do to keep me alive, I’m utterly amazed that they exist at all. And all I’m left with is a humble thank you. At least, until the next time one of them bails on me, and then I’m sure we’ll start the inevitable and natural cycle of resentment and gratitude all over again.
Do you have something to say about your experience of health and body image? We’d love to be in touch. Send an email to email@example.com.