Living Beyond the Diagnosis

From a Facebook post in one of my MSA Support Groups:

“Like I honestly want to live just not under these circumstances 😞 I’m just ready to be at peace”

As I read through Sarah’s (Name changed to protect the Poster) heartfelt Facebook post and the subsequent comments, I can’t help but feel a deep sense of empathy. You see, I too am battling multiple system atrophy (MSA), and I understand all too well the physical and emotional toll it takes. It’s a relentless journey, filled with pain, frustration, and moments of despair.

(Sarah’s) words echo the sentiments of many of us who are grappling with this cruel disease. The longing for peace, the questioning of one’s worth, and the overwhelming sense of hopelessness can sometimes become unbearable. It’s a daily struggle to find meaning in a life that feels like it’s slipping away, piece by piece.

Yet, amidst the darkness, there are glimmers of light. In (Mary’s) comment:

“I have those days and then I try hard to remember I have a lot to still offer. Many days I want to give up and something will happen to remind me that I’m still needed.”

Or (Jane’s) reply:

“My first thought each day is damn I’m alive my second thought is how to make this day a good day 😉”

I see the unwavering love and support that exists within our MSA community. The solidarity, the shared experiences, and the genuine compassion are beacons of hope in an otherwise bleak landscape. Even in the face of unimaginable pain, there is beauty in the connections we forge with one another.

But as I reflect on (Sarah’s) plea for peace and understanding, I find myself grappling with my own inability to offer words of comfort. How do you console someone when you’re facing the same struggles yourself? How do you find hope for others when you’re struggling to hold onto it yourself? I’m reminded of how prevalent these thoughts are amongst this tattered community by replies like these:

“I know the feeling. I feel guilty I wasn’t the human I used to be. Unfortunately our family gets to. Watch to(o) while we suffer. This is a cruel disease.”

“I am just fighting against this feeling so hard. I am living in a body that is (in) unbearable , pain , but I love my family so much.”

“I have no quality of life just existing. they say it’s me but I find that really hard to believe 😞”

“I’m just over life and question god a lot like why (wasn’t) my life worthy enough to be great”

The truth is, there are no easy answers. There are no magical words that can erase the pain or provide certainty in the face of uncertainty. As someone living with MSA, I wish I could offer (Sarah) and the others who share her despair a glimmer of hope, a ray of light to guide them through the darkness. But the reality is that MSA is a terminal illness, without a cure (currently), and no guarantees.

And yet, despite the absence of a cure or a definitive prognosis, there is still power in the present moment. There is still beauty to be found in the love we share with our families, the laughter we cherish with our friends, and the simple joys of everyday life. In the midst of our suffering, we can still find moments of grace and gratitude.

So to (Sarah), and to all those who are fighting their own battles with MSA, I offer this: You are not alone. Your pain is valid, your struggles are real, but so too is your resilience. Hold onto the love that surrounds you, cling to the moments of joy, and find solace in the knowledge that we are not defined by our illness.

Together, we can find strength in our shared humanity, courage in the face of adversity, and hope in the midst of despair. And though our journey may be fraught with challenges, we can take comfort in knowing that we are not walking this path alone. We are bound together by our shared experiences, our shared struggles, and our shared humanity.

So let us continue to lift each other up, hold each other close, and walk hand in hand through the darkness, knowing that even in our darkest moments, we are never truly alone.

~Coach~