Amanda Donnell

When Memory Was My Superpower

Before my MS diagnosis, I trusted my memory more than my GPS. I could recall conversations, dates, and random facts without effort. Now, two and a half years later, I wish I had carried a notebook everywhere the way I do now. I put off writing about the MS patient event I attended three months after my diagnosis. I hoped I would remember more details or find notes I never actually wrote. That version of me did not take notes. That version of me also had no idea how much uncertainty would fill the minutes, hours, and days between appointments.

When the hospital invited me to an MS patient event with dinner, drinks, and a chance to meet other patients and the Atrium care team, I wrestled with whether to go. Going to events where I don’t know people is a slight stressor in addition to needing to take off work early. However, I saw it as free knowledge and maybe a chance to calm my spiraling thoughts. My best friend asked to go with me and to meet me there after work. His offer to come and presence there meant more than he knows. My friends and family have always been supportive, but asking for help was not something I did easily. I am better now, but I still worry about being an inconvenience.

Walking In and Wondering If I Belonged

I arrived early and instantly questioned my decision. I am an extrovert, but walking up to strangers is still intimidating. Most early arrivals used mobility aids. We caught my symptoms early and I had completed my first infusion in December. I wasn’t walking like an inflatable tube man like I was a few short months prior. Nothing about me signaled MS. I worried I looked like an able‑bodied person who wandered into the wrong event. I questioned if I belonged there at all.

Thankfully, my best friend arrived and immediately started talking to a woman younger than us. She shared her MS story, including vision loss as a major symptom. Vision loss! At that point, I barely understood my own symptoms. I had no idea that MS presented differently in every person. Her story sent my mind into a quiet panic. I wondered if I would lose my vision. I wondered why she had and I had not. And I wondered if I needed to reorganize every question I planned to ask my neurologist.

Stories That Shifted My Understanding

After dinner, we moved into an auditorium to hear stories from other Atrium patients. Each story was different. Each story added new questions to my growing list. One woman shared that she had been hospitalized for over two months from a common cold because her MS treatment weakened her immune system. I was not a germophobe before that moment. After hearing it, I wanted to avoid anyone who might sneeze in my direction.

The stories were powerful. They were also overwhelming. I learned quickly that MS is not a single path. It is a thousand different paths that happen to share a name. That night started to teach me that my journey would never match someone else’s. It also had me thinking that I may need to stop searching for a universal answer.

The Bracelet That Stayed with Me

On every table, the hospital placed informational resources and bright orange silicone bracelets. They read “Multiple Sclerosis YOU WILL NOT FIGHT ALONE.” Most of the lettering has rubbed off now, but I still wear mine every day. It clashes with nearly every outfit, but it reminds me of that night. MS is unpredictable, but connection matters and community helps steady the ground.

Final Thoughts

That event taught me more than I expected. It taught me that MS stories matter, even when they scare us. It taught me that every journey is unique and that I cannot compare my symptoms or timeline to anyone else’s. Most importantly, it taught me that I need to advocate for myself. My MS story is mine, even when it does not match someone else’s. I walked into that event searching for answers. I walked out understanding that the only story I can truly speak for is my own.

My MS Journey Series

• Homepage: My MS Journey
• Post #1: How My Grandma’s Legendary Fall Shaped My MS Mindset
• Post #2: Choosing MS Treatment with Humor and Panic
• Post #3: How My MS Symptoms Finally Forced Me to Listen
• Post #4: Why I Joined My First MS Research Study
• Post #5: Why I Spoke Up About NIH Funding
• Post #6: Feeling Like an Inflatable Tube Man at the Grocery Store
• Post #7: My First MRI Update Since Diagnosis: A Surprising Step Forward
• Post #8: Beat Autoimmune: The Six Lifestyle Keys That Changed My MS Journey
• Post #9: My First Ocrevus Infusion and the Three-Year Price Roller Coaster
• Post #10: Sixth Ocrevus Infusion, New Routines, and an Unexpected Family Emergency
• Post #11: The Mono Chapter I Never Expected to Matter
• Post #12: Mean Baby by Selma Blair
• Post #14: Discovering the MeSsy Podcast and the Stories That Shape Us
• Post #15: You With The Sad Eyes A Memoir by Christina Applegate