On Knowing the Body
a letter about chronic illness, representation, and Maddie Mortimer’s MAPS OF OUR SPECTACULAR BODIES
Dear friends,
Happiest of Wednesdays. I write to you from the wonderful invention that is half-term, two weeks in which students and teachers alike can recover from the marathon that is starting the school year. Admittedly, it has been lovely but also hard, as the break came just as I felt like I was finally finding a rhythm to my weekdays and establishing really robust trust with my students. The woes of timing!
In any case, let us transition: I’ve been thinking about the body. Why? Well, I rowed again for the first time in a long while (glorious), I got my second booster shot (good but exhausting), and I had a pedicure on Friday (tender). I suppose I could have also said: I’ve been able to sleep in; I made and ate dinner with friends; I got my period; I went to a house party sober. My point being that I feel as if I could point to any recent experience as evidence of thinking about the body because our bodies are what enable us to experience the world.
But here I’m thinking particularly about the (my) disabled body, or the (my) chronically ill body, as November is Diabetes Awareness Month, and there’s nothing like a month-long campaign around the condition with which you live to bring it to the forefront of your brain. I am a Type One Diabetic and have been since I was eight, long enough that I can’t really remember life without it and yet I still struggle with the limitations of language to capture what life with diabetes is and means to me. To that point, I’ve rewritten this opening to you over and over again because I’m finding it challenging to put words to what I want to say about chronic illness.
Let’s try this: sometimes I’m asked if I wish I didn’t have diabetes. It’s an interesting question, often posed with the best of intentions and/or simply out of curiosity. And I get it. In many ways, I want it: I want the ease of not considering every carb that goes into my mouth, not worrying about forgetting my insulin as I run out the door, or the consequences I might face from the disease later in life. If a cure was announced tomorrow, I would gladly and readily take it.
Ahead of the miracle that would be finding a cure, however, we have treatment: insulin pumps and pens, continuous glucose monitors, and closed “loop” systems. I am ever grateful for the technology that helps me to protect my body, but I am angry that said treatment is almost always presented to fulfill a presumed universal desire to go about your day without thinking about your diabetes. Likewise, I am frustrated by that question (“Do you wish you didn’t have diabetes?”)—not at all at the asker but at the larger healthcare system that assumes diabetes is something I could lose, forget, or “not have” without now also losing a part of myself.
Because without an immediate cure, I don’t really want to forget that I have diabetes so much as I want to live in a world in which my own diabetes is more easily understood—a desire that may sound simpler than I believe it is in practice. I can say I’m “low,” say, and you can understand what that means based on what I tell you or what you know from the media, medical literature, others you know, etc., but you will never know the specificity of my shaking fingers, my weak legs, my desire to cry, nor the shame of what feels like an obvious failure to take care of myself: I took too much insulin, I wasn’t paying attention, I lack control over my own body.
And perhaps this is why I struggle: I want to share with you this relationship with the body because it’s both an intimate and everyday part of my life, but it’s one only I can know, the specific experience of living with Type One Diabetes mine alone. I initially wrote about this as a limitation of language, but perhaps it’s more accurate to describe it as a limitation of our bodies. We can only truly know the body that is ours.
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Earlier this fall, I talked with a friend about increasing representation on stage, and I will not do the injustice of trying to capture our conversation in a sentence here. But I regularly return to this from our discussion: when I thought about what would happen if I saw a character checking their blood sugar in a show, I said I’d probably cry. It would make this something of mine visible for a moment, have me feeling seen without having to exchange a single word.
But if I give it more thought, it’s not so much the visibility of someone with diabetes that I crave—you could have a character check their blood sugar and still remain a horribly inaccurate portrayal of the disease—but the recognition that illness alters one’s experience of life, no matter how slight. So in the stories we tell, yes, someone might wear a CGM. Yes, someone might take insulin ahead of eating. Yes, someone might need to sit down as they wait for their blood sugar to rise. It all sounds horribly mundane—but as is so much else in life, and we still carve stories out of it. If we don’t start broadening our depictions of bodies moving through the world, then I fear we once again minimize the impact (chronic) illness can and does have. It becomes like a magician’s act: squint your eyes, say abracadabra, and diabetes “disappears.”
Which brings me to Maddie Mortimer’s Maps of Our Spectacular Bodies. I should preface (especially after my long spiel) that it is not a book about diabetes but cancer, the main character, Lia, grappling with the unexpected recurrence of an earlier diagnosis. That said, I haven’t felt seen in a piece of media as a diabetic like this in a long while nor, I must add, transfixed by a style of writing. Mortimer makes bold stylistic choices in how text is displayed and how perspectives are woven together—choices that I believe pay off. It took me a month to finish because my reading life right now looks like ten books, all read halfway through, but I found myself utterly gripped by the end. I could, truly, go on and on about what I enjoyed.
However, what I want to draw our attention to is what the book is not. Maps is not a “cancer book” in so much as Lia’s cancer is not a separate object of the narrative (à la The Fault in Our Stars). Rather, it’s a book about being a human which means it’s a book about the body and this body happens to be sick. We see a woman grapple with the fact that she will probably die from her illness (I have thought the same), death not a taboo subject because it can’t be. Lia knows her body too intimately to keep up the illusion that she can escape, to cite Mortimer, “its own undoing.”
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And so I ask: can we wish for a life without illness without wishing away the recognition of illness?
I believe that Maps argues yes. Lia doesn’t want her cancer (who does) but she allows cancer to feature in her life. Her approach affirms something I’ve long (and again) felt but lacked words to articulate: that my illness is a passenger in the same vessel that is my body. To you, it might be nothing more than semantics, but when I think of diabetes and me as one and the same, it is a feeling of everything and nothing, revelatory in how it makes me feel whole. In fact, it returns me to right where I started: I’m not interested in separating my illness from myself, nor, more generally, the body from life.
While writing this all out, and continuing to reflect on Maps, I pondered: what if we all had Type One Diabetes? How would our relationship with our bodies change? Food? Labor and rest? I suggest this knowing that it would not all be for the better—and I worry you will read this thinking that I wish chronic illness on everyone, which let me be clear: I don’t—but it would certainly be different.
On a similar point, I don’t know what it is to live with breast cancer, but I can recognize that living with cancer—during treatment, after treatment—changes how you experience the world. And in the absence of the impossible act of allowing you to “step into” the body of another, art grants us the opportunity to hold knowledge of a different body for a time. It’s rare that this representation is done perfectly, so when I find something that comes close, I treasure it. I want to proclaim, Here is a book that sees me. So here I do that with Maps of Our Spectacular Bodies. I hope you pick it up.
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Closing a newsletter is an art I’ve yet to perfect, but as always, I’d love to hear from you; tell me if you’ve also thought about your/the body recently or what’s currently bringing you joy or what’s rattling around in your brain. I have ears for it all! Otherwise, and as always, thanks so much for being here. I’m grateful for you all.
With much love,
Bella
P.S. In the spirit of this newsletter, small things you might do to honor Diabetes Awareness Month: refuse to joke about diabetes (I promise you can’t get it from eating too much sugar), be specific about the type of diabetes you’re referencing (because Type One is different from Type Two which is different from Type 1.5 and Type Three and so on), and donate to a grassroots organization like T1 International that endeavors to get insulin in the hands of diabetics globally.
P.P.S. Things I’m Consuming
Another month, another round of recommendations! You know you love them :~)
+ And I Have Been: We all have Taylor Swift on repeat, I know, but if you can spare forty minutes to listen to Benjamin Clementine’s new album, I promise you won’t regret it. The man’s voice is beautiful, the songs haunting. I can’t get enough.
+ Work Appropriate: I’m a bit of an Ann Helen Petersen superfan; I think she writes with such clarity about the conditions of life today (and reimagining what they could be). As a new working woman (hehe), I find her podcast on work wonderfully insightful—it’s my latest treadmill listen.
+ Molasses Chocolate Chip Cookies: Baking and November simply go hand in hand—there’s little better than warming up the kitchen with the smell of cloves. This recipe from Averie Cooks remains a family favorite. Enjoy, enjoy.