Rumors
“And then she told me the truth. She said other moms think it’s because you’re drinking.”
The words sounded like nothing and everything, like the loudest scream had landed in a vacuum chamber; the sound came out, but immediately seemed absorbed back into the speaker’s throat. Each woman in the room tried to look at the wall, the floor, the door. We tried to look anywhere but inside ourselves. We all knew those words could be for any one of us.
Reality
I’d been diagnosed with a movement disorder (multiple sclerosis, or MS) a few weeks before, and had found my way into a support group. MS can strike anyone, but like PD it is predominantly sex-skewed, and our group was full of women. I wasn’t yet a mother myself, but at 30 I had a solid resume in female culture and its tendency to sniff out internal threats. Mothers were vetted and judged relentlessly. To stay in the good graces of “the other moms,” a woman had to leave no doubt she was stable, safe, faithful, and above all, trustworthy with another woman’s children. Failing that last test was deadly.
I don’t remember much about the confessant. She was about my age, with a large build, brown wavy hair, and a pleading smile. She drove a minivan full of kids to and from soccer games, taking responsibility for getting not only her own children but those from several families to and from soccer practice. But she had a secret. Her diagnosis was unknown to the other moms. What was known was, her gait was starting to waver. Sometimes she stumbled when getting out of the van, and her walking around the field increasingly was marked by weaving steps and pauses to regain her balance. She thought she was keeping her condition private, but all she was doing was doing was leaving those who observed her to conclude she was drunk. And even that was not the worst of it.
“She told me they all think I’m driving drunk with their kids in my van!”
Resolve
More than any other single experience, that day in the support group 22 years ago changed my attitude about disease-status disclosure. It helped me understand how naive I was in at least two ways. First, anyone with eyes that could see probably knew something was going on with me. I had thought I was pretty smooth with my cover ups, pausing to pretend to arrange my dress or tie my shoe when I couldn’t move forward with confidence in a straight line; yet I knew instantly upon hearing the soccer mom’s story what her peers saw, and I had to accept that others could see the same thing in me. Every other woman in the room that day seemed to have this epiphany.
Second, I had to confront myself for letting my diagnosis with a chronic degenerative neurological condition be the most terrible thing anyone could know about me, or the most terrible thing they could think they knew. That day a lot of us in the room realized the power we’d ceded to our disease, literally without a fight. It was shocking, really, to process that somehow we had stopped thinking anything else about ourselves was significant. In that moment when we all wanted to look at anything but ourselves, we had to admit what we had done. We had decided our disease status meant more than:
- Our loyalty
- Our friendship
- Our devotion to the common welfare of our communities
- Our compassion
- Our sense of humor
- Our love
- Our nurturing of children
- Our support of our partners and parents
- Our voices on justice
- Our deep knowledge of Hemingway and Angelou
- Our seriously good lasagne
You get it. We allowed a diagnosis to erase us. And I’ll say it again for the people in the back: We allowed it, without a fight.
Reframe
Having a chronic illness like PD or MS is serious. But that day in the support group, I realized there are more serious things. Being willing to be believed to be a drunk driver with children in your car rather than being willing to be seen as one of millions of people who have the misfortune of a chronic illness begs some uncomfortable questions we have to address within ourselves. Why would we ever rather be seen as callous and unethical than as simply having a neurological illness?
The answer to that question will be individual and may take time. What I want to tell you is, our kind of illness is a crucible. And if we allow it, we can have a lot more that matters about who we are and how we live than whether or not we can walk a straight line. In fact, accepting and telling the truth about all of who we are can become that unwavering path.
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Photo by Jonathan Pendleton on Unsplash
Elizabeth Gaucher earned a Master of Fine Arts in Creative Writing from West Virginia Wesleyan College with a concentration in Creative Nonfiction. She is the founder of and editor-in-chief for the online literary magazine, Longridge Review. Follow her on Twitter @ElizGaucher