Ashley Memory

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.

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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.

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