Living Beyond the Diagnosis

In the quiet moments before dawn, when the world is still wrapped in slumber, I often find myself contemplating the day ahead. It’s a ritual that has become all too familiar, a routine born out of necessity rather than choice. As a multiple system atrophy (MSA) sufferer,  each day brings with it a unique set of challenges that are as unpredictable as they are daunting.

For those unfamiliar with MSA, it’s a rare and progressive neurodegenerative disorder that affects various systems in the body, including movement, balance, and autonomic functions such as blood pressure. It’s a cruel and unforgiving disease, robbing its victims of independence and dignity, one symptom at a time.

As someone living with MSA, I’ve learned to adjust my expectations accordingly. Gone are the days of grand aspirations and lofty goals. Instead, I’ve come to accept that sometimes all you can hope for is a “good day.” It’s a simple desire, a bar set so low that it almost feels absurd to articulate. And yet, it’s all I have sometimes.

You see, living with MSA means waking up each morning with uncertainty looming overhead like a dark cloud. Will today be a day filled with debilitating tremors and muscle stiffness? Or will it be one of those rare, precious days where the symptoms seem to relent, if only for a brief moment?

The truth is, I never know what to expect. MSA is a relentless adversary, capable of turning even the most mundane tasks into Herculean feats. Something as simple as getting out of bed or pouring a cup of coffee can feel like insurmountable obstacles on bad days.

But despite the challenges, I cling to the hope of a good day like a lifeline in a stormy sea. It’s a beacon of light amidst the darkness, a reminder that even in the face of adversity, there is still beauty to be found.

A good day, for me, is not measured by grand achievements or monumental milestones. Instead, it’s defined by moments of peace and contentment, however fleeting they may be. It’s the warmth of the sun on my face as I sit outside, the laughter of loved ones filling the air, the simple pleasure of a good meal.

In a world where time feels increasingly precious, I’ve come to cherish these moments with a reverence bordering on obsession. Each one is a reminder of the fragility of life and the importance of finding joy in the small things.

Of course, living with MSA also means coming to terms with the harsh reality of my condition. It’s a terminal illness with no cure, a fact that weighs heavily on my mind with each passing day. And yet, even in the face of such grim prospects, I refuse to succumb to despair.

Instead, I choose to focus on what matters most: quality of life. For me, that means finding ways to cope with the symptoms of MSA, whether through medication, physical therapy, or adaptive strategies. It means surrounding myself with a support network of friends and family who lift me up on the days when I feel like I can’t go on.

And yes, it also means holding onto hope for a cure, however distant it may seem. I’m acutely aware that a cure for MSA is currently dependent on experimental clinical trials, a fact that fills me with both optimism and trepidation. But until that day comes, I will continue to live each day to the fullest, buoyed by the simple hope of a good day.

So, as I face another morning shrouded in uncertainty, I do so with a quiet resolve and a steely determination. For in the end, all any of us can do is take each day as it comes, clinging to the hope of a better tomorrow while finding solace in the simple joys of today.

BTW – Today is looking like a “Very Good” Day 😉

~Coach~