The Pandemic Helped Me Disclose My Multiple Sclerosis

Lemon bars and sieve with powdered sugar on wooden table

A simple question started it all. Last summer, a woman at my church named Jan was coordinating a socially-distanced approach for our annual school supply giveaway, and she asked if I’d be willing to staff a tent as part of a drive-through event in August.

Before the pandemic, I rarely told acquaintances about my multiple sclerosis (or M.S.). Now 53, I had battled a relapsing-remitting form of the disease for more than twenty years behind a wall of secrecy.

In lighter moments, I tend to think of M.S. as a comedy of errors, what happens when your immune system decides to wage war on your own body by mistake. What’s not funny are the symptoms, and in my case, include a slow walk and a lazy left leg. Monthly infusions of a special drug slowed the progression of my disease; however, I was ashamed of my illness because it’s erratic and tricky to explain.

Fortunately, the man who became my second husband needed no droll elevator speech—he didn’t mind hearing the long version of my story. We had recently married, and I started attending services and volunteering at his church, Science Hill Friends Meeting. I so longed to find my place within this vibrant community of Quakers in the rolling hills of central North Carolina, but the shame of my M.S. held me back.

“I would do it myself,” said Jan slowly. “But I have dermatomyositis, a neuromuscular disorder. Unfortunately, I can’t tolerate the heat.”

The spread of the coronavirus, and its particular danger to those with underlying conditions such as mine, changed everything. New friends such as Jan freely admitted their own vulnerabilities: asthma, diabetes, heart ailments, kidney disease, and many other illnesses just as serious as M.S.

Her admission loosened the words from my throat. “And I have multiple sclerosis, which means I don’t function very well in hot weather either.”

With this confession, the weight of my burden rolled off my shoulders as easily as water. Jan simply nodded, and in that moment, a glimmer of solidarity flashed between us.

Living with M.S. taught me resourcefulness, the art of figuring out where to park when accessible spaces are occupied, or how to balance a little wheelbarrow to carry tools to the garden. As it turned out, no one else volunteered to staff the tent for school supplies, but my years of finding work-arounds spurred me to think of another way.

“Here’s what we’ll do,” I told Jan. “We’ll collect the supplies at the church, and in August we’ll drive them in our truck to the county education department. They’ll happily unload it and distribute the supplies to teachers.”

“I love it!” she said. “What can I do?”

“Nothing at all,” I said. Then I thought of her famous dessert. “Well…. I wouldn’t complain if you made your fabulous lemon bars.”

After my diagnosis at 32, my first neurologist advised against disclosing my illness at work, out of concern for my career. This made me paranoid and guarded around others. For fear of a debilitating relapse, I saved my sick days, and I also hoarded vacation time, which was easy because my first husband preferred skiing and camping trips that excluded me. The extra days enabled me to retire early from my job as a college admissions counselor, and eventually I built a better life with a man who supported me when I didn’t feel so well.

Now that I knew more about Jan, she and I became closer, and when the opportunity felt right, I shared my condition with others, such as Ann, a woman who had fought ovarian cancer and would take medication for the rest of her life. From this champion gardener, I learned how to grow romaine lettuce and string beans. My new friends made no apologies about their challenges, and their zest for life inspired me to contribute to our community on a deeper level. At their invitation, I began attending monthly meetings of the Quaker Ladies, a small group of women in their seventies and eighties who led community service projects for Science Hill.

Still, not everyone knew about my affliction. At our March meeting, I chatted with Margaret and Joyce, two ladies who sat at my end of the table. We all still wore masks, and out of safety, we brought our own lunches rather than our usual potluck. Yet the chatter seemed bubblier than ever. In their early eighties, many of the women had already been fully vaccinated. “You’re not eligible yet, are you?” asked Joyce.

Before my first confession to Jan, I might have hesitated to be honest. But this disclosure paved the way, and I piped up immediately. “Actually, I had my first shot last week,” I said proudly. “I’ll get my second on April 11.”

At these words, a hush fell over our side of the table, and even in masks, I saw an eyebrow or two rise up out of surprise. Then I explained that I qualified early for the vaccine because of my M.S. “Good for you,” said Joyce. “All right!” declared Margaret. Their reaction and the connection I felt with these matriarchs made me wish I’d shared my illness earlier. Ironically, my fear of the coronavirus was tempered by the freedom it gave me. For once, I felt like one of the crowd.

New confidence about sharing my malady helped me find the words to speak to younger people as well. After church last Sunday, I reminisced with Jan about how far I’ve come, and Peyton, an eleven-year-old boy and one of my favorite youngsters, approached us and listened intently. “What is M.S.?” he asked, as I walked away. “It’s a disease of the nervous system,” I explained. “It means that sometimes the signal to my brain doesn’t always reach my leg and I stumble.”

“Oh,” he simply said. His reaction was as casual as if I’d admitted to having a common

cold. “You know what?” He held a hand over his head and laughed. “I’m almost as tall as you!” I chuckled too, amazed at how children often take in stride so easily the things that adults worry about.

I didn’t think Jan had overheard my words with Peyton but that very night she sent me an email. She had indeed recognized another major leap for me. Her subject line read: “Time for lemon bars again!”

For years, I thought my stoicism made me stronger, but now I realize that being honest helped me connect more deeply with the people in my life. It enhanced my empathy and cured my shame.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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“Move Your Head” – A Lesson in Conquering Doubt and Worry

Bobcat Front track Skid loader surrounded by grass and fallen leaves.

“What did you say?” I asked J.P.

“You heard me. Move your head! It’s in the way!” We were within five inches of each other’s face. Close enough for a kiss, but the usually dreamy blue-green eyes of my husband narrowed with business today. My job was to steady the external braces of our new book shelves against the supports so he could apply clamps while the glue between them dried.

What he was asking me to do seemed impossible. “So…I’m supposed to lean in and hold the braces with my hands but you want me to get my head out of the way….”


This action made perfect sense to J.P., a die-hard do-it-yourself-er and sculptor raised by parents who had grown up in the Great Depression. He had built his first house all by himself, and he was determined that we would do much of the work on our new house by ourselves. To his credit, even with my multiple sclerosis (M.S.) and small 5’2” frame, he never assumed I couldn’t do just about anything. But I had my doubts.

J.P. was right. I was able to paint most of the walls in the house, even if I had to take short breaks to relieve my fatigue and rely on him to paint the ceilings. Almost daily, I used a little wheelbarrow to carry loads of wood to the burn pile, which after a while, helped improve my balance and strengthen my leg muscles. And today, I was helping build bookshelves, something I never would have thought possible.

J.P. even believed I could learn to operate the skid-steer loader and help with grading. That, however, had been a failure.

My brain didn’t work like his. While I had once easily managed communications for a busy college admissions office, the loader required a different kind of thinking. Try as I might, I couldn’t control the hand-operated levers to steer and accelerate while simultaneously pressing and depressing the foot pedals to raise and lower the bucket, the actions needed to move earth and level our yard.

Move your head.

As I soon realized, that was precisely the problem. My head got in the way. Ever since my M.S. diagnosis at age 31, more than twenty years ago, I had tip-toed through life expecting the worst. Meanwhile, as it does, life barreled on. Through the years, I weathered a number of exacerbations, even one that included temporary blindness. I had no choice but to keep going, with a son to support and a house payment to make. Each time my M.S. flared up, I worked with my doctors to find a new medication that helped alleviate the symptoms, and I consulted with my supervisors to find a way to adjust my assignments so that I could work from home until my exacerbations abated. Once I got better, out of gratitude I volunteered to fill in for other people at the office who had their own challenges and had to miss work. I also managed to overcome a major personal obstacle and came to the difficult decision to finally leave an unsupportive spouse. To my great delight, I eventually found love with J.P., and two years after we met, we married.

Still, I couldn’t conquer the worry and self-doubt. Could I really help J.P. build a house? But while I fretted and somehow endured, I noticed that people my own age were replacing knees and hips, awaiting liver transplants, even dying from cancer, traffic accidents or worse. Yet here I was, still alive at age 52, and healthy enough to stand on a ladder and build bookshelves.

Move your head.

J.P.’s saying eventually became my motto. Whether I steadied a metal ring against a plumbing pipe while he crimped it or held the level against the wall while he installed a towel rack, these three words never failed to ease the tension. I eventually perfected a maneuver that allowed me to stretch my neck like a turtle, putting my hands to good use, but keeping my head out of his way. As in yoga, this move took immense concentration and helped root me in the present moment, a welcome escape from useless worries about the future.

Move your head.

I have found a different way of thinking. And just the other day, I decided to climb back into the cab of the skid-steer loader. I haven’t mastered digging or the use of the bucket yet, but I can steer and accelerate, and I’m not half bad at turning around.

“That’s the way to do it!” yelled J.P., as he watched me park the loader. He helped me out of the cab with a broad grin. He knew, and I knew, that before long, I’d be moving far more than my head. I’d be moving earth.


Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Picking Up the Pieces of Broken Glass: A Lesson in Speaking Up For Myself

Shards of broken glass scattered on a gray floor.

From the corner of my eye I saw our patio umbrella catch the wind and pirouette off the deck. No big deal. It was March 2020, and this had happened before. Later that day, however, my husband J.P. and I discovered that our table had galloped along with it.

The bent metal table laid on its back in a field of sparkling glass. The tempered top mostly crumbled into harmless pebbles, but a few jagged crystals glittered ominously in the sun. “If one of those got into your foot,” said J.P., “it could be with you for a long time.”

As we carefully picked up the pieces, I wasn’t thinking of the table. Instead, I thought of another incident entirely. Something that would indeed be with me for a long time.

In early February, I sat around a table at a local pub, the site of a regional writers’ gathering. “I’ve been to that conference before,” said Suzanne, the president, a tall, garrulous woman who spoke of a yearly gathering for an association of mystery writers. She paused, then added: “But there were too many walkers there for me.” The breathy laugh that flew out of her mouth only contributed to the miasma of disquiet in the room.

I hadn’t paid full attention to everything that had been said so far, but this was discrimination, no doubt about it. Discrimination against either age or physical impairment. Or both. Coincidentally, I actually knew someone who had won the annual grand prize awarded by the same association for her first novel. Margaret is in her early eighties and doesn’t use a walker, but this fact was irrelevant. She is a talented writer, and I count her as one of my most cherished friends.

I knew only two people, writers from my monthly circle, at the meeting. The rest of the fifteen writers were strangers, hailing from other towns in the region. Suzanne now appeared to remember that someone else there, a woman in her seventies named Ivy who sat catty corner from me, had walked in with a cane. “Ivy,” she said. I held my breath. This would be the perfect time for an apology.

“You just have a cane. That’s okay. That’s not a walker.”

A prickly heat crept up my neck. Suzanne may have hoped to ease the tension, but her latest remark only exacerbated it. I bristled with anger, thinking of both Margaret and Ivy. But I just sat there.

Now, as I picked up the glass around me, I wanted to kick myself again and again. Why didn’t I say something? It would have been the perfect opportunity to stand up against a clear-cut case of both age and ability discrimination.

Not long after this incident, desperate to understand myself, I had called my level-headed friend Erin. She’s pursuing her master’s degree in mental health and social work and knows far more about human behavior than I do. She attributed my silence to shock.

“You were too stunned,” she said. “Being caught off guard is completely normal. You weren’t ready to take in something so hurtful. Nevertheless,” Erin cautioned, “it never hurts to have something prepared in case this ever happens again.”

While on my knees among the broken glass, I thought again of all the things I wish I had said. “Hey, hey,” I could have said. “There’s a reason that Alice Munro won the Pulitzer Prize for Literature at 82. She labored her whole life to earn it.”

Before I began writing full time, I worked for years as a communications director at the admissions office of a local university. As a manager, I regularly stood up for my staff and made sure they received both credit for their accomplishments and raises for increased skills. I also stood up for animals, and I was proud of the fact that all of our three pets were rescues. Standing up for others was important to me.

That didn’t happen at the pub. I had done nothing. Nothing at all.

Maybe, as Erin said, that was normal. But there was a reason I couldn’t stop thinking about what happened. There was something deeper going on.

As a twenty-year warrior of multiple sclerosis, I know firsthand what it was like to have a disability. I also know what discrimination felt like. Five years ago, when I was still working in the admissions office, I ducked into an accessible restroom, one that bore the sign reserving it for disabled persons. My physical impairments, such as wobbly legs and the occasional imbalance, aren’t always noticeable, but they are very real. The accessible restroom was next door to my office, but even with my bladder incontinence, another side effect of M.S, I rarely used it, because most of the time I could make it to the public restroom downstairs. But on that day, I had no choice. And when I finished, I opened the door to meet the glare of Carl, a fellow employee now standing outside. “Handicapped bathrooms are for the handicapped,” he snarled, gesturing to the cane he was using as he recovered from a knee operation. Embarrassed, I had just slunk away, wanting that moment to end as soon as possible.

Now, after what happened at the pub, I suddenly wished I had stood up for myself back then. It could have been as simple as saying: “Carl, you shouldn’t make assumptions about other people. Some impairments aren’t as obvious as others.” Carl wasn’t a bad person, but his reaction revealed that he suffered from another condition more serious than a knee injury. Two actually: ignorance and insensitivity. The same went for Suzanne. I didn’t know her, but as tactless as they were, I doubted if her remarks were maliciously motivated. Nonetheless, because of my silence, both Carl and Suzanne may since have gone on to say things that hurt other people. I hated this more than anything.

Over the next few weeks, scouting for glass below our deck became an act of redemption for me. Tossing the pieces into a bucket one by one taught me it was never too late to right a wrong. It made me happy to know that every shard I found would never lodge in someone’s foot one day.

I had missed the opportunity to speak out about what Suzanne said, but it wasn’t too late to chart a new course of speaking up for myself. Perhaps, I told myself, if I did a better job standing up for my own impairment, I’d feel more confident defending others in similar situations. A new opportunity soon arose.

Sorry to drop this on you, said the email from Diane, a woman at my church. But someone needs to handle the college care packages this year.

I enjoyed my work on the missions committee very much, but for the past few months the requests for my assistance exceeded my ability to fulfill them. Instead of grudgingly giving in and raising my anxiety, I decided to take the initiative and picked up the phone.

“Diane,” I said, as soon as she answered. “There’s something I need to share with you.” I then told her that I had struggled with multiple sclerosis for years. Something that very few people at my church knew. And that I had retired from my job in an effort to take charge of my health and reduce the stress in my life. Then I drew a deep breath. “For this reason, I’m not able to help at this time.”

As I spoke the words, no thunderbolt from God shook the house, and Diane appeared to understand. “Of course, of course,” she said, and we ended the conversation on a friendly note. After I hung up, I didn’t feel ashamed at all. I felt empowered. Not just for myself but for the others I would defend at my next opportunity.

“When things like this happen,” Erin explained to me later over tea, “we’re so quick to beat ourselves up about what we could have said, or what we could have done, but in reality, these are great internal conversations. Taking the time to process what happened led to a wonderful exploration of deeper thoughts and inner conflicts you had yet to discover.”

“The process can be uncomfortable,” she added, “but if you are not uncomfortable, you’re not doing the work.”

The work. Aha. I knew that I’d probably be walking over a field of glass for the rest of my life. I might never find all the pieces. Maybe that wasn’t a bad thing. Every fragment I found would remind me that I had a choice in how I wanted to spend my time. That I had a responsibility to be fully present in those moments. To not be ashamed of my illness. To give myself permission to speak my mind. And to always be on guard for thoughtless remarks before they gather wind, like the umbrella, and take flight.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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A Writer with Multiple Sclerosis Finds Unexpected Gratitude with an Antique Typewriter

Photo of hands typing on an old black typewriter.

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19.

“Not another typewriter!”

When my husband J.P. held open the box delivered by U.P.S. to reveal his latest acquisition, I lost it. As a neat freak, nothing sends me into a tizzy faster than clutter. But since the coronavirus quarantine, the sight of J.P. happily tinkering with his 1917 L.C. Smith & Brothers machine stirred an unexpected wave of gratitude.

The quarantine all too easily reminded me of what we didn’t have. Sunday services at our church were on hiatus, the spring library book sale wouldn’t happen at all, and our paper towel supply was dwindling fast, but the slow and steady rhythm of those old-fashioned keys oddly soothed me. How fortunate we were to have a one-of-a-kind collection of typewriters actually used by people who faced their own trials, including both World Wars, the 1918 Influenza Epidemic, the Great Depression, and more.

We all have our battles. I’m a twenty-year warrior of multiple sclerosis (M.S.), a disease that occurs when the immune system attacks the protective coating of the nerves. Symptoms vary, but I suffer primarily from weak legs and chronic fatigue. Monthly infusions of a special medication help abate exacerbations by suppressing my immune system. This makes me particularly vulnerable to communicable diseases even in the best of times, so a self-imposed quarantine right now could easily be the difference between life and death for me.

As my M.S. progressed through the years, it began to take much longer to assemble my thoughts. The computer, for all its innovations, wasn’t helping. I could type over 60 words per minute on my laptop without once thinking about line breaks. With auto-correct I didn’t even have to worry about misspelled words or basic grammar. This might be a blessing for most writers, but it wasn’t the case for me. The ease of executing perfect sentences brought out my inner critic and stifled the serendipitous flow of ideas and connections. I prefer writing poems on paper for this very reason. To give my right brain permission for creativity on longer works such as essays and short stories, I desperately needed a tool that better matched the pace of my thinking. “You ought to use a typewriter,” J.P. had often said, but I was always too busy.  Now, courtesy of the quarantine, I had all the time in the world.

As I sampled the various machines in his collection, I felt like Goldilocks. The fit had to be just right. The keys on the 1917 L.C. Smith & Brothers model were far too deep for my short fingers. Even so, the smooth glass-topped keys felt nothing short of luxurious after years of typing on a plastic keyboard. I liked where this adventure was going.

Next, I simply had to try the 1919 Oliver #9 Standard Visible Writer, one of the most unusual machines I’d ever seen. Its twin columns of type bars, much like the ears of a bat, gave the machine a comical air. Unfortunately, the typewriter lacked a top for the “d” key, and it hurt my finger too much to tap the naked lever. But the curly-cued serifs of its typeface melted my heart, as did the gentle tinkle of the bell as I approached the margin. It was less a rebuke than an Atta girl!

The beige 1950s Smith-Corona Portable Electric (manufactured after L.C. Smith & Bros. merged with the Corona Typewriter Company) reminded me of the typewriter I’d first used in high school typing class. The motor’s salubrious hum eased my mind, as if a muse waited patiently for me to compose my thoughts. And every once in a while, I heard the voice of Mrs. Ledwell, my eleventh-grade typing teacher. Keep your fingers on the home keys.

The height and feel of the keys on the black-lacquered 1936 Royal KHM perfectly suited Goldilocks, and the pace between keystrokes gave me just enough time to choose my next word. It helped that I couldn’t find the hyphen on this machine, because the mark on that particular key (a dim little line beneath the asterisk) was obscured by age. I suddenly realized how much I’d overused that poor little punctuation mark. Now, rather than overloading one sentence with multiple ideas and artificially linking them with a hyphen, I was forced to concentrate on one idea and one sentence at a time. You might notice that this essay, which was first typed on the Royal, contains no hyphens at all.

Typing is a mindful journey. I could never type more than 35 words per minute on even the Smith-Corona, but when it comes to writing, it’s not about the speed. Adjusting for characters I couldn’t easily find (like the hyphen) led to new ways of thinking well worth a loss of words per minute. I realize it’s okay to be me. Getting to know each of these typewriters with its own little quirks reminded me that it’s not just okay to be different, it’s better to be different.

The gratitude I felt for J.P.’s typewriter collection quickly blossomed into an appreciation of many more things, which has made the quarantine much easier to bear. The Gerbera daisies now unfurling from the pot. The little green anole lounging in the sun on the deck. And all around the house I hear J.P. whistle “Little Deuce Coup.”

“Your study is looking a little cluttered,” he tsk-tsked, with a wry smile.

“Really?” I said. “I hadn’t noticed.”


Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.