Living Beyond the Diagnosis

Living with Multiple System Atrophy (MSA) is a journey fraught with despair, fear, and deep sorrow. I often find myself facing the sentiment shared by so many in my Facebook Group communities: “I’m not scared of dying, but I am scared of dying with MSA.” This statement resonates profoundly because it encapsulates the essence of our collective struggle. It’s not the end that terrifies us, but the relentless decline, the loss of function, and the stripping away of our independence.

The fear of becoming a mere shadow of who we once were haunts us all. As one member of our Facebook group poignantly expressed, it’s the loss of quality of life and independence that makes this journey so excruciating. We worked hard, we had dreams and plans for retirement, only to see them crushed by this merciless disease. The sense of purpose that once drove us now seems elusive, replaced by the daily struggle for survival.

Yet, amidst the darkness, there is a choice of defiance. We can refuse to let MSA dictate our lives completely. Finding new sources of happiness, scaling back our expectations, and fighting for even the smallest victories are acts of rebellion against this monster. It’s not easy, it’s a battle for survival at its most primal level, but it’s a fight worth waging.

In these Groups I have read stories of those who have watched their loved ones suffer for years, their bodies becoming stiff and frail, yet they managed to live each day with courage. Their strength becomes our inspiration. We are reminded that death is a part of life, but living in fear of it should not be. Instead, we must seek out joy, no matter how fleeting, and cherish the moments we have.

The loss of loved ones to MSA is a pain that words cannot fully capture. One member shared the profound sorrow of losing their husband to this hideous disease yet found solace in the belief that he was finally free from its clutches. Her faith provided a comforting perspective: to be absent from the body is to be present with God. It’s a reminder that while MSA may take our physical selves, it cannot touch our spirits.

Living with MSA often feels like losing our identity. I, too, feel like a veteran in a war I never chose to fight. The tears of my wife, the worried looks of my friends – these are the daily reminders of the toll this disease takes not just on us, but on those who love us. But I choose to believe that I was chosen for this battle for a reason, even if that reason remains unclear as of now.

The fear of becoming an invalid, completely dependent on others, is a nightmare we all share. The thought of being unable to communicate our needs, of being attached to tubes, is terrifying. Yet, even in the face of this fear, we must cling to our defiance. MSA may be a formidable foe, but it shall not win.

Every day, I wake up and choose to fight. I choose to find joy in the little things, to cherish the moments of clarity and strength. I choose to live, not just survive. Because fuck MSA. It shall not win. We are stronger than this disease, and our spirits are unbreakable. Together, we will face this monster with courage and defiance, and though it may take our bodies, it will never take our will.

~Coach~

#FuckMSA