Living Beyond the Diagnosis

Dear Future Self,

As I sit down to write this letter, I can’t help but marvel at the journey we’ve been on. It’s a journey filled with ups and downs, challenges, and moments of profound growth. You see, I’m writing to you as someone living with Multiple System Atrophy (MSA), a rare and often misunderstood neurological disorder. But more than that, I’m writing to you as someone who refuses to let MSA define me.

You may be wondering why I’m addressing you, my future self. Well, it’s because I want to take a moment to reflect on where we’ve been, where we are now, and where we hope to go. MSA has thrown its share of curveballs our way, but it hasn’t dampened our spirit or extinguished our dreams.

In the early days of our MSA journey, we faced a whirlwind of uncertainty and fear. The initial diagnosis was like a heavy cloud that hung over us, casting shadows of doubt and anxiety. But, my dear future self, we chose not to let those shadows consume us. Instead, we turned to knowledge and education. We armed ourselves with information about MSA, its symptoms, and its progression. Knowledge truly is power, and it gave us a sense of control over a situation that seemed uncontrollable.

Along this path, we’ve encountered moments of frustration, moments when simple tasks became herculean feats. We’ve faced the harsh reality of a body that sometimes betrays us. But through it all, we’ve discovered resilience within ourselves that we never knew existed. We’ve celebrated small victories, like weekends in wine country with friends or a romantic weekend getaway with our wife. We’ve learned to cherish the everyday joys that others might take for granted.

Our journey with MSA has also been marked by the unwavering support of loved ones, friends, and the MSA community. We’ve connected with others who understand our struggles and share our hopes. These connections have been a source of strength and inspiration, reminding us that we’re not alone in this battle.

As I write to you today, my dear future self, I want you to know that our dreams remain intact. MSA may have altered the path, but it hasn’t diminished our aspirations. We dream of a future where medical research continues to advance, where treatments and therapies become more effective, and where a cure for MSA is found. We dream of a world where awareness of this rare condition is widespread, leading to better support and understanding for all those affected.

But most importantly, we dream of a life filled with purpose and love, regardless of the challenges we face. We’ve learned that MSA is just one chapter in our story, not the entire book. We will continue to pursue our passions, savor the beauty of each day, and find joy in the small moments.

So, my dear future self, let this letter serve as a reminder that we are strong, resilient, and filled with hope. Our journey with MSA is far from over, and there will be more twists and turns ahead. But with the support of those who love us and the determination that burns within us, we will face the future with courage and grace.

Until we meet again, keep dreaming, keep fighting, and keep living.

With love and hope,

Coach Eric