A band of dense cumulus massed on the banister
February 11, 2013 § Leave a comment
There are currently no known cures for most autoimmune diseases. They are discussed as chronic conditions that must be in a lifelong process of mitigation through biomedical means. My doctors would plead with me, as I shuffled into their offices with my walker, to take Humira. Biologics are a new class of drugs, barely a decade old, used to treat a few autoimmune conditions. Humira, which carries a black box warning, is an exact clone of a human antibody. It’s a human protein cultivated in the bodies of mice. These biologics function as immune-suppressants, essentially shutting down the body’s immune system to prevent it from attacking itself.
But, left without its defenses, the body becomes vulnerable to fatal cancers, other autoimmune diseases, and opportunistic infections; Humira’s medicine-as-technology counteracted my body’s self-destructive but “natural” behavior. Forget the dualistic mode of thought, in which nothing was wrong with me, but something was wrong with my body. The idea is that I was deficient, and the only way to become the optimal version of myself was to embrace a drug that would make me do no more than function, all for $3,000 a month.
My doctors’ assurance was that I would get well. I would be able to get a job with benefits that would allow me to pay for insurance. Biomedical treatment operates on a capitalist understanding of time. Rather than embracing the regenerative powers of the body, the idea is to get back to work as quickly as possible. It is the body’s radical autonomy that resists commodification. To spite our optimal productivity, it gets sick. Sickness can be masked and treated but the body responds nonetheless. It reacts. It may take longer to recover than is convenient to your boss. We do not have time to get you better. We have time to make you functional.
“You are too young to live like this!” became my well-intentioned doctors’ refrain. “What a shame! We can get you back to work! You should be out living your life!” And so, they perpetuated the supposed narrative of health and death: illness is something which comes late in life, right before the end. They acted as if I was experiencing an inconvenience. As if I wasn’t living my life anyway. They didn’t understand that this experience had stripped and shed a light on me, making it simply impossible to carry on as before. There was no return to “normal.”
They often asked me about what I did before I became sick. As if that was me, and this a brief interlude of discomfort. In fact, most discussions in doctors’ offices are about pain or discomfort. These are important issues. Proust wrote, “Illness is the doctor to whom we pay most heed; to kindness, to knowledge, we make promise only; pain we obey.”
As my life came to be ruled by the sensation of pain, it became impossible to think about anything except the sensation of pain. But pain is only the partial story of the body, a symptom of an underlying problem, whether an injury or a systemic issue. Pain is the body calling out for your attention. I wanted to be healthy again, not simply living without pain. I wanted a medical practice that addresses the true health of the body.
I resisted starting Humira for this very reason. My doctor explained that the way to eliminate the pain and inflammation was to clamp down my overactive immune system. Doing this would prevent it from attacking my joints and my intestines, leaving me pain-free. But it didn’t take care of the underlying problem: my immune system is confused. Eliminating my immune system sounded like a bad—an incomplete—idea.
Most of my friends and family urged me to take what was offered. Even the people that I’d identified or had self-identified as radical or left-leaning were suspiciously unsuspicious of the biomedical industrial complex: that every other industrial complex demanded rigorous scrutiny, but in matters of health and the body, medicine was unmarked and depoliticized. read more
PHOTOGRAPH: Lindsey Fast
Tagged: affordable care act, ankylosing spondylitis, autoimmunity, biologics, carolyn lazard, critical art ensemble, crohn's disease, cyborgs, donna jackson nakazawa, humira, immune system, new york, paris, philadelphia, socialist patients' collective, susan sontag, virginia woolf, western disease