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In late September, for the first time since the pandemic started, a member of our three-person Michigan household—my husband Mike—tested positive for COVID-19.
I was tempted by two emotions: pride that we'd outlasted this ubiquitous disease for so long, and shame that we'd finally contracted it. But I knew better.
When he was just under a year old, my son began nodding his head involuntarily in a series of benign-looking little jerks. Eventually he was diagnosed with a rare and devastating seizure disorder. Most babies with infantile spasms (IS), we learned, would go on to have intellectual disabilities and lasting seizures.
My first emotion at hearing this diagnosis for my son was disbelief. I'd done everything right: taken prenatal vitamins, stopped drinking alcohol and attended medical appointments and screenings. I even burned through the What To Expect book series with the seriousness of a PhD student.
And even though doctors would reassure me later that I'd done nothing wrong, I still felt cheated. Health was something, due to my effort, I felt was owed to my son, and me. Normalcy was his birthright, I thought then.
All the dire warnings that came with my son's diagnosis—significant intellectual disability, mostly uncontrolled lifelong seizures—have come to pass, despite trips to prestigious medical centers, despite dozens of pharmaceutical interventions, despite trials of dietary therapies and of CBD, despite three brain surgeries.
Today my son is a twenty-two-year old with a killer center-court basketball shot, a great sense of humor, and a passion for music. He loves school, loves his classroom of peers with similar intellectual disabilities within our local public high school, where he'll be able to attend—like all other special education students in Michigan—until he's twenty-six. And he gives and receives love with a wide extended family and community who appreciate him just as he is.
He still experiences near-daily seizures, though. And to dismiss the serious challenges he faces—and will especially face when he outlives my husband and me—living as a disabled person in a world generally not equipped to accommodate him is to do him and his peers an injustice.
We've been careful to acknowledge a line, though, between his disease–epilepsy caused by his IS–and his intellectual disability, which we've come to view as a part of who he is as a person, not as something to be cured.
I have often thought of a line in a book where Susan Sontag cites 19th-century philosopher Arthur Schopenhauer. "Disease can be challenged by the will," Schopenhauer claimed then. It's an appealing idea, that illness can be outsmarted.
There's some truth to it: my family of three worked hard to avoid COVID and temper its effects by being vaccinated and double-boosted. During the worst phases of the pandemic, we were vigilant, masking and avoiding crowded indoor spaces. While my son's epilepsy didn't make him more at risk for a negative COVID outcome, we knew that his intellectual disability did, and that at best, a COVID-related hospital stay for him would be stressful and difficult. So, once my husband was diagnosed, he isolated and my son and I took up residence in another area of the house. Masks came back out for all of us.
Likewise, the medical interventions we've pursued on our son's behalf have probably improved his quality of life. A recent deep brain stimulation (DBS) device implant, for example, has taken his seizure counts from near-daily down to a few per week.
But to equate avoiding sickness with "correct" behavior is hurtful to persons who live with illness despite their best efforts. It further pushes an ableist narrative that falsely associates heath with choice, even moral choice.
While my son's school community has been supportive, I find myself flinching when I witness perfect-attendance awards given at schools; something my son is unable to achieve due to his epilepsy. And while my employer and colleagues are sympathetic, I still have to push down the twinges of guilt I feel at the family sick leave I've taken to support my son's medical care. It's hard to shake a deeply-embedded feeling that I'm less productive than my colleagues with healthy families.
There's a saying in the disability community: disability is "the only minority group that anyone can join at any time." The same can be said for illness, whether temporary or lingering.
After my husband's bout with COVID, my brother called me. "You guys never got it, huh?" he said, referring to my son and me, amazed that we'd avoided it. And while I know better, I listed all the ways we'd worked hard to stay healthy, again equating our avoidance of the disease with our hard work. I should have told him, "We've done our best, but illness doesn't discriminate." I wish I had said that we didn't require any congratulations, because we had just been lucky.
My son developed his illness—and my husband got sick—because they are human. Each of us can be nothing more, and nothing less, than this. Into this world illness falls. My husband made a full recovery from COVID, and my son and I haven't contracted it, for now. If we do, thanks to my life witnessing my son's disease and disability, there's one emotion I won't feel: shame.
Susan Hall writes from rural western Michigan, where she's at work on a memoir of her son and his epilepsy, An Eloquent Cortex. Find Susan on Twitter @SusanCoolHall.
All views expressed in this article are the author's own.
