Amendments
To be seriously sick is to be your own amateur medical team and principal investigator, lawyer and advocate, PR firm and executive assistant, librarian and documentarian, all perpetually understaffed and underfunded. It is complex project management, even for those with full time care, constantly version-controlling one’s own treatment and administrative paperwork, public and private narrative. Four years in, I’m still pretty bad at it by the standards of each profession; many of which I learned on the job while too sick to study or work for pay.
In this week’s edition of The Audacity, Rachel Dlugatch writes: “To believe someone without proof, or rather, to take someone’s word as proof, goes against the adage, ‘seeing is believing.’ It is an act of compassion, of solidarity, of defiance, and ultimately, a radical act with transformative capabilities. In the doctor’s office, believing someone at their word can be the fine line between life and death.” She writes, “To live with fatigue is to live with a secret not even you know is true.”
The first person we have to convince when we get sick is often ourselves, and then our loved ones and increasing concentric circles of experts and gatekeepers, all while our powers of persuasion and documentation and interpretation are impaired. It’s a project that may start long before you have evidence other than your own felt sense that Something Is Wrong, wrapping the invisible problem in words and data til you can see it’s outline.
Apologeisthai, the Greek origins of “apology”, means to speak in one’s defense, from apologos (an account, or story), apo (away from). It did not gain a sense of regret or reconciliation until the 18th century — a defensive narrative when on trial rather than consolatory action. Mend, however, has always been short for amend: to improve or rectify. A lover once told me that they improve all things for those they care for, how we can do the problem-solving equivalent of editing or mending someone’s life and making it a little bit better by our presence, let them lean into something solid and trustworthy, even briefly.
Since getting sick, I have given out hundreds of apologies. For deadlines and events missed, errors made and words misspoken or misunderstood, grief and worry caused, for disappearing into silence or being unable to stop trying to explain. I’ve told and retold the story of illness, as I’ve collected more data and regained the interpretation skills to understand what happened — why I was suddenly so unlike my usual reliable meticulous self — to make myself believable with evidence.
The virus edits the body, albeit poorly, deleting grey matter and renin and endothelial cells, blacking out memories, editing a life down to the bare minimum. Building it back up is its own complex project. Some errors made have been un-mendable, even with apologies or actions, even with the whole team of professionals I have had to become for myself. The one harmed unwilling to hear the story or risk believing me; the time lost irretrievable.
The Impairing Curse is a long-form, serialized experiment in personal essay, science journalism, policy analysis, and poetry. To start at the beginning and read it in order, go to the first essay or read about the aesthetics and labour of illness, the science of salt, and the failures of public health. To support this project, share it online or subscribe. The series is intentionally not behind a paywall, to ensure broad access to patients and timely circulation of information in our evolving public health crisis, but paid subscriptions are welcome.