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Why I Kept Multiple Sclerosis a Secret — and Why I Stopped

I finally stopped hiding MS and starting having a say.
Image: Theresa Schwegel and her two children
Theresa Schwegel and her two children.Theresa Schwegel

When I found out I was pregnant with my first child, I was terrified. Yes, the new-mom fears of inadequacy and vulnerability were in flux, but so was the fact I already felt inadequate and vulnerable, because I have multiple sclerosis.

I’d been living with the disease for over ten years. I knew its tricks. But I was diagnosed young, and the only women I knew with MS were old enough to be my mom. They weren’t ‘sick’ when they had babies.

A trip to the neurologist didn’t help my confidence. The doctor said the likelihood of a relapse postpartum was 40%. He said I needed to go back on medication, which I’d quit five years prior because I felt drug-sick. He said that breastfeeding on the interferon I’d been taking was proven to be “moderately safe,” and then advertised a handful of similar new treatment options.

I told him I didn’t want to take any medication and in fact, I was hesitant to have an epidural. I said, “I guess I have a thing about not feeling my feet.”

He tried on a vague smile and said, like another diagnosis, “You want to be a hero.”

I was so pissed. I’d been hiding MS for years because of that very sentiment — that I was kidding myself if I thought I could act like a normal person. A drug-free birth — what would have been a reasonable though ‘alternative’ request by a neurotypical patient was, for me, an outlandish attempt at wanna-be bravery. I should have walked out of there wielding my middle finger.

I never want my children to feel the way I did when I was a kid. I don’t want them to have to navigate my need to hide. And I certainly don’t want them to discover who I am from a box of old photos.

Instead, I went home, and went quiet. I was stunned that I’d just been victimized by someone who was supposed to "health-care." And at a time when I had no symptoms — a time that was supposed to be happy. I told myself: I’m no hero, but I do have a say in what happens to me.

And I thought of my Great Aunt Helen.

When I was a child, we’d take day-trips to visit Helen in Chicago. My parents would pack my grandmother Lorena and me into the backseat of the Oldsmobile. I’d pet her soft fur coat while watching out the window for the familiar but curious landmarks along Foster Avenue: the zigzag block of bungalows with rubble stone facades, the hold-your-breath half-mile stretch of Bohemian National Cemetery, the Sweden Shop’s year-round display of blue dishes. I was fascinated by the city.

I was also fascinated by my great aunt. She was housebound but always dressed for dinner—her hair curled, a cashmere cardigan, pearls. She lived in a two-flat with a pristine grand piano bigger than her back yard, a white-bricked fireplace that had never seen a flame, and worldly treasures that were not to be touched but were touchstones for my imagination.

Helen, too, seemed off-limits. She was soft-spoken except with her caregiver, Annie, who she summoned like a complaint. She always spoke to Lorena as though they had an audience. And she was sweet to me, but never candid.

Each time we’d visit, Helen would roll her wheelchair to the lip of the front room where the Cubs were losing on the rabbit-eared TV. She didn’t have children, but she kept a limited collection of toys in a shirt box for me. I’d sit on the floor and play while Helen and my grandma would cover the front-page news, family gossip, and “so on and so forth.” They never once mentioned what seemed like the headline: Helen’s health.

Nobody talked about it. Or why she was in the chair, or had to take so many pills, or could never kick the weak cough. It seemed like she was always getting worse, but also like she’d been born that way.

Except I knew better, because I was a seven-year-old snoop. Most of the house was roped off by rule, but no one kept tabs on me. The sisters would visit while my mom would prepare a holiday-grade dinner and my dad would run off to the hardware store. Annie would sit in the back room, her feet up, Helen’s family on the clock. I had plenty of time to go through every drawer and closet from the foyer to the fire escape. I’d stolen time at the desk where Helen wrote checks, and at the vanity where she kept her Marshall Field’s face powder. I also spent part of an afternoon in the unfinished basement, where I discovered photo albums—pictures of Helen with men, with friends, with my grandma, even — and in every one, Helen was standing.

That afternoon, my dad discovered me. He told me to go outside.

Any time I asked about Helen, I was told to go outside. I wasn’t often allowed out there alone, and my exploration was limited to a city block—but trust me, take a walk down a city block when you’re from a one-street town — it’s the stuff of stories. That block on Maplewood — and Helen — are the stuff of my stories.

Here’s one: it was the week after Easter, 1982. While my parents unloaded the trunk and my grandma buzzed the door, I chased past her and up the stairs; I didn’t bother peeling off my coat because I was on a beeline for the Fannie May pastel mints Helen always had on hand in the spring.

I stopped short when I saw her in her bedroom. “They’re early,” she was complaining to Annie, who was making the bed. On unsteady feet, Helen was making her way from the vanity to her wheelchair.

I was stunned. I mean, I saw the photos. But I had never seen Helen on her feet.

Cut to the front room for cocktail hour — scotch accompanied by a tray of pickled herring and sausage with rye crackers. Nothing that appealed to a kid — including the discussion of Ronald Reagan’s radio address on nuclear policy. (Just days before I’d asked my dad if there was going to be a nuclear war and he said, “Not today,” which made me anxious every day after that until about 1995.) Seeing Helen walk just an hour before must be what seared this statement into memory: in her softest voice, she wondered, “Wouldn’t we all wish for a say in what happens to us?”

It wasn’t until I was diagnosed with MS that I knew what Helen meant, and understood why she didn’t want to talk about her struggle with it. Who wants to be met with pity? Or be known for what’s wrong? Who wants anybody to whisper, “Well, she has MS,” like an answer to some question of character? I, for one, did not want to lead with a degenerative disease, and quickly got good at hiding mine. MS is unique, that way—and these days, unless you know how to read an MRI, you wouldn’t know a good lot us have it. My symptoms, for example, are invisible: numbness, neuropathy, forgetfulness, fatigue, discomfort, depression, pain ...

But none of those things are nuclear war; for a long time, none of those things made me worry about tomorrow. And then came my baby girl.

A healthy baby girl. Without an epidural, and without the predicted relapse. Despite knowing I might not have a say in what happened, I refused to be held victim by the disease like my aunt was, when a wheelchair was the only solution. But what held over from her generation to mine was to refuse discussing it. Because what’s there to say?

I pushed the disease into the smallest, darkest corner of my brain because I didn’t want to fight all the negative perceptions — or let them compromise my new identity. I didn’t want to be a sick mom.

Then, in 2013, I began writing "The Lies We Tell." Like my five previous books about tough outsiders with big secrets, the protagonist Officer Gina Simonetti is imperfect, insecure and still determined as hell. And her big secret is MS.

Writing Gina came easy, and her hiding made perfect sense to me, but I knew very few readers would feel the same way. At one point I thought I’d rewrite her — give her an acute injury. But then I realized: that’d be me hiding.

Then I thought of my daughters. I have two, now. (Even if I’d wanted an epidural with the second, there was no time — she was nearly born on the way to the hospital.) I still hadn’t had a major relapse, but I was also still hiding — or rather, trying to ignore — the neuropathy, the pain.

I imagined my daughters’ perceptions of me. Wondering why I was irritable, or impatient. Or off-limits, like Helen.

And I realized: I never want my children to feel the way I did when I was a kid. I don’t want them to have to navigate my need to hide. And I certainly don’t want them to discover who I am from a box of old photos. The problem with hiding MS — or any life-altering problem — is that nobody gets to know you.

So here I am. As I write this, I can’t feel my feet. And I haven’t been back to the neurologist. I’ve been lucky, though. Or maybe just lucky so far. But no matter what, I won’t let my daughters wonder. They will always know I had a say.

Theresa Schwegel is the author of the novel "The Lies We Tell."