Ulli von der Ohe
Ulli von der Ohe (she/her) is a researcher and writer who encountered Johanna Hedva’s famous question, “How do you throw a brick through the window of a wall if you can’t get out of bed,” in her bed. Inspired by fellow Sick Women, she started writing about living, as long as she can remember, with Crohn’s and is exploring contemporary autotheoretical accounts on chronic illness in her PhD dissertation.
– the alien body – the alien in my body – my alienated body –
Imagine, for a minute, what it would be like to inhabit a body without fear.¹ I try and fail. Even though I am inescapably my ill body, I have always felt safer in my mind, perpetuating the Cartesian dualism as a coping mechanism. Ever since I was a child, I have lived with somatophobia—literally translated as the “fear of the body”—and for a long time, I was most definitely afraid of my sick body and what it would and could do. Sometimes I still am.
What does it mean when an illness is noted in your patient file, when it becomes inextricably linked to your body? How do you explain to a child what it means to live with Crohn’s?
When I was younger, I never knew how to spell it, whether it’s Crohn’s or Chron’s, because one is the name of a doctor and the other one mimics chronic—lasting a long time, lingering, staying with me. Actually, for quite some time, I thought that Crohn’s was so named because it would not go away, that it would not really matter where the ‘h’ goes because one would mean the other. Crohn’s is a chronic illness.
Crohn’s is not only chronic; for a long time, it was also considered an autoimmune illness. How do you explain this concept to a child? “‘[I]t’s like you’re allergic to yourself.’ […] ‘It’s as if your body is rejecting part of itself.’ […] ‘You’re eating yourself alive.’”² With these images in your head, how do you not become afraid of your body?
Autoimmune means that (1) parts of the self […] appear to other parts of the self […] as other than ‘self’, and (2) the ‘non-self’ within the self provokes acts of self-destruction.³ I am attacking myself from within; my body’s immune system is destroying my tissues, violently transgressing boundaries instead of upholding them, creating patchy ulcerations in my intestine and fistulas.
I learn that these images not only live in my head but on the screen, too. The creature that bites its way out of the gut and bursts out of the body in Alien (1979) strangely resembles a colon with eyes and sharp teeth. Allegedly, it was inspired by the screenwriter, Dan O’Brannon, who lived with the same illness as me. The intestines turn alien, destroying the host. After all, the boundary between science fiction and social reality is an optical illusion.⁴
Perhaps, it should be a relief that after years of futilely trying different medications, these inflamed intestinal parts of mine are surgically resected. The pathological examination shows “heterogeneously distributed perforating and fissuring severe chronic-active inflammation with chronicity features and fibrinopurulent serositis,” now preserved in formalin in a hospital storage. I asked in my pre-surgery consultation what would happen to it and learned that “[t]o have a body means you will not always see what has happened to it,”⁵ except for a scar.
I am not saying that resecting these alien body parts of mine has not also been a temporary relief of built-up fear. I feared my intestine, but I mourn it, too. I wonder if it became alien not because of the inflammation but rather through consequentially resecting parts of it in surgery, staying true to the oldest meaning of the term alien as “residing in a country not of one’s birth,” as these intestinal parts are now forever exiled from their homeland, my body.
I am still learning to cope with this thing called the body.⁶ I am still learning that “[w]hatever it is, I am my body as much as it completely evades me.”⁷
References
¹ Laing, Olivia. Everybody: A Book About Freedom. Picador, 2021, p. 309.
² Cohen, Ed. On Learning to Heal: Or, What Medicine Doesn’t Know. Duke University Press, 2023, p. 60.
³ Cohen, Ed. “My Self as an Other: On Autoimmunity and ‘Other’ Paradoxes.” Medical Humanities 30, no. 1 (2004): 7–11, p. 8.
⁴ Haraway, Donna J. “A Cyborg Manifesto: Science, Technology, and Socialist Feminism in the 1980s.” Socialist Review 15, no. 2 (1985): 65–107, p. 66.
⁵ Boyer, Anne. The Undying: A Meditation on Modern Illness. Penguin Books, 2020, p. 152.
⁶ Hedva, Johanna. “New Artist Focus: Johanna Hedva on P. Staff, What Can Be Seen Farther than Any Color on Earth.” Lux, September 1, 2020.
⁷ Lazard, Carolyn. “The World is Unknown.” Triple Canopy 24 (2019).
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