Living Beyond the Diagnosis

The sheer gravity of hopelessness can be a crushing weight, an unseen force that pulls at the very fabric of your being. My journey, openly shared on this platform, has never shied away from the raw, the real, the achingly true. But there are times when the truth hits with the subtlety of a storm, relentless and unforgiving.

It was in the pursuit of something resembling hope, a flicker of possibility in the fight against the relentless tide of Multiple System Atrophy (MSA), that I found myself at the threshold of the Mayo Clinic. The promise of a stem cell clinical research trial felt like a lifeline, an anchor against the encroaching storm. My candidacy was not just assured; it was ideal—until, in one cruel twist of fate, it was snatched away.

The irony is a bitter pill; a back fusion from years ago, a necessity borne from the aftermath of a car accident and degenerative woes, now stood as the impassable barrier to my salvation. The scar tissue and bone growth from past healing now hindered the very process that could offer me more time, more life. A Spinal Tap, a seemingly simple procedure, was my undoing.

In the quiet sanctuary of the Mayo Clinic, surrounded by the best minds and kind hearts, I had allowed myself the luxury of dreaming. Dreaming of what could be, of sharing every step of this new chapter with an audience that has walked through the fire with me. I envisioned detailing the sweat test, the complexity of the autonomic reflex screen, the gravity of conversations with preeminent neurologists, the intimate bond with the clinical staff. But dreams are delicate, ethereal things, and mine were dashed in a single, suffocating moment.

I felt numb. The devastation was beyond words, a silent scream in a room where the walls echoed with the stories of so many like me. My wife, ever the lighthouse in my stormy seas, shared in this silent scream. We cried—a deluge of shared pain, a testament to the dreams we had dared to nurture together. Those tears were not a sign of weakness; they were the purest expression of love, of shared disappointment, and of profound loss.

The journey home was a somber affair, a retreat not just from a place, but from a future that would never be. We clung to each other, knowing that the solidity of our bond was the one thing that remained unbroken. In the quiet conversations that filled the spaces between heartache, we knew that to stand still was to be consumed by the very pain that threatened to define us.

So we commit to moving forward, not because it is easy, but because it is necessary. Our dreams may have been shattered, but not our spirit. Our fears, though realized, will not claim victory over our resolve. I am left with no choice but to persevere, to continue the search for a clinical trial designed to halt or slow the merciless progression of MSA. This commitment is not born from naive optimism but from the unyielding refusal to let disappointment have the final word.

I pledge to myself, to my wife, and to those who have found solace in my words, that I will not be deterred. For every closed door, I will search for a window. For every setback, I will look for a new beginning. It is not just a fight for life; it is a fight for meaning, for the ability to wake each day with purpose, with the defiance that characterizes the human spirit when faced with the insurmountable.

This is not the end of my story. It is, in many ways, a painful new beginning. But it is a beginning nonetheless, and I will navigate this uncharted territory with the same honesty and openness that has marked my journey thus far. There is much to be done, more to be faced, and through the devastation, I find a renewed commitment to life, to love, and to the unending quest for a moment more of precious time.

I needed to get this blog post out as soon as I was able to, but I will be following up this week with 4 or 5 posts, chronicling this trip to Mayo. I have so much to share about the process and an amazing piece of information shared with me by Dr Singer, regarding early signs of this disease that can help future generations of MSA sufferers keep this Silent Killer at bay.

Talk Soon and God Bless