A Decade of MS

Ten years. It sounds like a long time, doesn’t it? Yet here I am, standing at the anniversary of my multiple sclerosis (MS) diagnosis, reflecting on a decade filled with twists, turns, and unexpected lessons. It all began on an ordinary day that turned anything but ordinary.

The afternoon everything changed

It was a follow-up appointment at the emergency room where my journey started, one that I initially thought was just about a nosebleed that was cauterized. I never imagined that a simple visit would lead to a life-altering diagnosis. In just two and a half hours, a CT scan and MRI later, my world flipped upside down. I remember sitting on the exam table in the exam room. The doctor’s calm voice contrasted sharply with the storm brewing in my mind. “We think you have multiple sclerosis. Don’t worry, you’re not going to die.” Huh? Where did THAT come from?

At that moment, I wasn’t just hearing the words. I was absorbing their weight. The emergency room doctor did the most wonderful thing by not blowing everything out of proportion. He mentioned that I could use my phone to do some research while he finished paperwork. It gave me a chance to think. What did it mean to have a chronic illness? How would it change my daily life? My future? My identity? Mainly, I was trying to figure out how I was going to tell my mom, who was napping in the van, that my nosebleed check-in had turned into MS.

The newbie phase

As I navigated this new life as a person living with MS (PwMS), I quickly became a researcher. I dove headfirst into medical journals, articles, and any resources I could find. It was more than just gathering facts about the disease; it was a desperate attempt to find comfort in knowledge. I wanted to understand what I was up against, to feel safe in the details of a complex condition that suddenly became a part of my identity.

I spent countless hours reading about symptoms, treatments, and the latest research. I immersed myself in the science of MS, hoping that understanding the disease would somehow help me regain control over my life. Each piece of information was a small stepping stone toward feeling equipped to face what lay ahead. I learned about the different types of MS, the medications available, and the lifestyle changes I might need to make. I was on a quest for safety, seeking solace in the understanding of a labyrinthine illness that felt overwhelmingly daunting.

A career in research advocacy

That initial wave of information gathering didn’t just help me cope. It launched me into a new career in research advocacy for multiple sclerosis. Learning that I had MS forced me to stop in my tracks and reevaluate everything. Everything before almost ceased to exist because my after was going to be my forever.

Instead of giving in to complete despair, I chose to harness my experience and channel it into something positive. I became passionate about sharing my story and advocating for research that could help others like me. It’s been a profound gift to connect with fellow PwMS and to work tirelessly for better treatments and, hopefully, a cure. Each conversation and each shared experience has fueled my resolve. I’ve discovered a purpose in this journey that I never anticipated but now deeply cherish.

An obsession with anniversaries

We people seem to have an obsession with anniversaries, it feels like. We are consistently marking the past and how long it has been since the beginning of something. Marriages even have their own special milestones, celebrated with wood, silver, or gold. But as I reflect on my ten years with MS, I realize I don’t get a prize for surviving each year. There are no celebratory gifts or milestones to mark this journey. Instead, I find myself looking back, not just at the challenges but at the growth I’ve experienced.

Over the past decade, I’ve learned so much about resilience, strength, and the importance of community. MS fundamentally changed my worldview and my place in it. I’ve faced moments of frustration and sadness, but I’ve also discovered unexpected blessings. I’ve forged strong connections with fellow people living with MS, drawn strength from their stories, and found my voice in advocating for those who can’t.

Of course, there were times when I failed myself. I’ve had moments of self-doubt, frustration, and anger at the unfairness of it all. But I’ve come to understand that these feelings are part of the journey. They don’t diminish my growth; they are integral to it. Each setback has taught me lessons about patience and self-compassion, and I’ve learned to celebrate the small victories along the way.

Looking forward

As I celebrate this ten-year milestone, I’m filled with gratitude for the lessons learned and the connections made. Sure, MS has taken a lot from me. Some days are harder than others, and the unpredictability can be tough to handle. But I can also point to the positive outcomes that have emerged from this experience. I’ve built a community of support, discovered a passion for advocacy, and learned to embrace a new version of myself.

So here’s to ten years with MS. It hasn’t been the path I would have chosen, but it’s shaped me in ways I’m only beginning to understand. I’m still learning, still growing, and still finding my place in this world. And while I don’t get a prize for surviving the past decade, I do get to continue the journey… one step at a time.