worried sick

Yesterday morning at 4:30, after I'd been tossing and turning for over an hour, the dreaded seizure came. It had been just six days since the last one. In the early evening the night before I had seen its approach, Calvin's telltale agitation, his finger-knitting and eye-poking common harbingers. Sadly, there isn't much we can do but lie awake worried sick waiting for it to happen while fretting over all things big and small—the supreme court, neglected inboxes, this filthy house, the election, social justice.

Since Calvin was two, he has had thousands of seizures. During them, he has bitten his cheek till it bleeds. He has struggled to breathe and turned blue. He has fallen out of bed and gotten bruised. He has succumbed to all kinds of dizzying side effects from antiepileptic medications—headaches, nausea, dyskinesia, ataxia, agitation, confusion, panic, anorexia, malaise, withdrawal. At least four times this year Calvin has taken a fall, usually on days before a seizure as he cranes his neck to stare at the sun. Sometimes he topples straight backwards as if he were timber. At others, he tips and drops to the side like a stone. Despite the fact that we've got our hands on him, he somehow manages to slip out of our grasp. The few times that he has hit his head, he was thankfully on the lawn, which is somewhat forgiving. 

As I lay awake next to Calvin as he drifted back to sleep after the seizure, I thought about our litany of miseries—his hospitalizations, his injuries, his seizures, his close calls, the difficulties in caring for him. The only thing we don't have to worry about are his medical costs thanks to decent health insurance through Michael's job, plus supplementary state Medicaid just for Calvin.

The healthcare costs for a child like Calvin are astonishing and include bills for medications, examinations by his primary care provider, neurologist, endocrinologist, urologist, gastroenterologist, neuro-ophthalmologist, pulmonologist, orthopedic surgeon, and x-rays, sonograms, CT scans, MRIs, EEGs, sleep studies, splints, orthotics, glasses, eye surgeries, nuclear medicine tests, ambulance rides, emergency department visits, hospital admissions, intubations, IVs, blood work, insurance premiums, copays, deductibles, and in-home nursing when there's not a pandemic.

Back in 2008 near the start of the Great Recession, my husband's case for tenure at Bowdoin College was in doubt. We spent weeks worrying about what we'd do if he were released into the worst job market since the Depression in a field with scant opportunity. If Michael were ultimately denied tenure and unable to find a new job, we worried that healthcare insurance premiums and deductibles would be cost prohibitive, assuming we could even get insurance for Calvin considering his myriad preexisting conditions.

In the end, despite the uncertainties, Michael was awarded tenure. This meant we were not faced with the dire situation in which many Americans find themselves today having lost their jobs and, thus, their health insurance due to a recklessly managed and consequently rampant pandemic.

Over the years, I've read and heard stories from countless Americans who have gone bankrupt due to massive healthcare costs from everything from appendicitis to cancer. From its inception, the Affordable Care Act (ACA), aka Obamacare, which provides healthcare to over 20 million Americans and requires insurers to cover preexisting conditions, has been attacked by republicans. Prior to the ACA, insurance companies regularly denied health coverage to people like Calvin, or charged exorbitant premiums to do so. The Biden/Harris ticket aims to expand the ACA to include a Medicare option for anyone who wants it. In stark comparison, the current administration is actively fighting to destroy the ACA despite still not having a plan to replace it; the Supreme Court will hear oral arguments on the fate of the ACA one week after the November election.

Americans' healthcare—a necessity to life, liberty and the pursuit of happiness and essential for a safe, secure, healthy, and prosperous nation—hangs in the balance, leaving many of the most vulnerable Americans to lie awake at night worried sick and getting sicker. In the most prosperous nation in the world in which so many people like to claim that all lives matter, none of us should have to live that way.

Calvin in the hospital after a prolonged seizure, March 2006