16 December 2014

Fear of Side Effects / Call Me Superwoman

Theorists of disability have very rightly criticized the "medical model" suggesting individuals should be rehabilitated, normalized, fixed, in favor of a social model calling for modifications to the built environment that avoid putting, as Leviticus forbids, a stumbling block before the blind, or, for instance, stairs when a ramp or a sidewalk-level entrance would allow more equal access.

My experience of disability, however, involves interactions with the world that are hindered by exacerbations of chronic illness, typically asthma attacks triggered by upper-respiratory infections that for most of the people who catch them are at worst an annoyance, as well as by life-threatening allergies to things that other people aren't in the least bit bothered by. Or that they love, like mushrooms and cats.

Building streets with curb cuts and buildings with ramps as a matter of course is an obvious act of inclusion. Eliminating smoking in public areas to help everyone avoid upper airway disease is a no-brainer. But object when Edinburgh University gives a cat a library card or a cafe owner opens the premises to cats, and you might get death threats.

Actually, I'm not interested in challenging anyone's right to consort with cats, though if a friend has a cat, I can't visit, ever, and The Mate hasn't eaten mushrooms at home in years. I am trying to make the point that the idea that disability is a socially constructed phenomenon, rather than an individual problem subject to remediation, is problematic in my experience.

Chronic illness seems to depend upon a medical model. The wheelchair icon and the understanding of disability as constructed by exclusionary social practices both suggest that disability in individuals is stable. But chronic illness seems to be characterized by flux, whether progressive decline or alternating periods of illness and remission. Medical help, usually in the form of pharmaceuticals, can delay decline and treat attacks and exacerbations. Sometimes medicine is needed to keep a person alive long enough to recover and return to remission.

If there were a pill that made my allergy to cats go away? I'd take it in a minute.

Actually, there is such a pill: prednisone.

The problem with prednisone, as with many other medications people take for epilepsy, asthma, depression, crohn's disease, rheumatoid arthritis, and multiple sclerosis, to name just a few, is side effects.

Maybe a medication is extremely effective in treating a symptom, and the side effects are so minor, that it's not worth worrying about.

Maybe a medication works like that for most of the people who take it, but for a small minority, it turns out to have life-threatening effects.

Maybe it wasn't anticipated during trials that a lot of real-life people taking the drug under investigation would also be taking another medication at the same time, and the interaction between those two medications would turn out to be potentially lethal.

Maybe the test population didn't include any women, because women's hormonal cycles were long thought to screw up the results, and the drug turns out to be more effective in women. Or less effective.

Drug development and testing is done by people in lab coats, with careful measurements of doses, conditions, and outcomes. It sounds like science, it smells like science, it must be science. But real live people turn out to be so different in their responses to medications, including reduction of symptoms as well as side effects, that treating individuals turns out to be more art than science.

With some medications the line between effectiveness and toxicity is narrow. Or non-existent. If I took enough prednisone to eliminate my cat allergy I'd probably have a few great years. Manic years, since prednisone also is known to affect moods; it makes some people depressed and suicidal, but it makes me fly high as a kite. Kind of fun, and I tend to get a lot of work done, but not necessarily what I want when my body needs rest to recover from the infection that triggered the attack.

But then the side effects would almost certainly take over: weight gain, suppressed immunity, diabetes, hypertension, osteoporosis, psychosis, dementia.

Last week, I did a six-mile run and I lifted some weights, as well as other exercise. Monday morning, I woke up so sick I got winded brushing my teeth. I am the stumbling block, or in any rate my lungs are; there's no social reorganization that will change the fact that I need to breathe, or I'll be dead.

Even Harry Potter needed the occasional hit of oxygen during that underwater scene.

So I take just enough prednisone to control the symptoms. I watch as my cholesterol and A1C levels creep up, despite a vegan diet and lots of exercise. I need the medicine; I fear the side effects. As for the mania? I finished a book chapter, outlined another, and wrote two blog posts today.

Call me superwoman.