Living with undiagnosed or contested illness means existing in a fluctuating state of unidentified crisis. Our infant son, born with gastroparesis (delayed gastric emptying), GERD (gastroesophageal reflux disease), and IBS, was missing a diagnosis that eventually in his fifth year would be identified as Cyclic Vomiting Syndrome (CVS) .
Being forced into intense vulnerability by having an infant, a toddler, and then a young child with CVS was difficult enough without the fact that we, as parents, were also expected to become clear and concise self advocates in order for our son to be given care in that vulnerability. The thing is, no matter how clear and concise we were, there was no winning. We were frequently punished for having opinions and needs.
CVS created a relationship really, between our child as self and our child as biology. The cluster of symptoms forced a preoccupying relationship upon him and us, with the CVS being a very poor communicator, debilitating him with nausea and vomiting, and yet holding all the power, and then with our son being unable to communicate effectively at all, and holding none of the power.
We often communicated with medical professionals who considered me, in particular, to be an unreliable witness to our son’s condition. Being in these relationships was a dirty and necessary thing, and frequently understanding, if it came at all, often tended to be either in the form of crude moralism, crude reductionism, or dispensation of mundane medical information as advice.
There's a general sentiment amongst able-bodied adults that all doctors find objective truths, solve puzzles, or help patients with complex cases, but that's just the heroic rhetoric we use to frame the profession. It's not reality. Like everything else, our medical system actively discriminates against difficult to diagnose people, because people who are sick with syndromes, a collection of symptoms that are caused by any number of underlying etiology and physiology, represent a failure of the system to do what it’s supposed to do: make people well.
The poems and prose within are about what it was like trying to find an accurate diagnosis for our son. The message I hope readers get from this is that you can persist and hope through illness. The message I hope doctors get from this is that when you've run out of doctor things you can offer the patient, always make sure you've offered the human things too.
I write poetry and prose about living with chronic and contested illnesses and about family relationships.