Does this moment deserve notice? I’m ambivalent. It wasn’t a dramatic and traumatic event involving fiery crashes and brave rescues. The exacting work of discovering and uncovering hidden chronic illness rarely makes the news. I don’t want to be stuck in the past, but I do want to acknowledge the constant drum beat of my impairment, or what’s known as the progress of my disease. Maybe it’s sheer survival I want to spotlight.
I often look back on that day when I learned to use an acronym to describe the inner slippage of ability and functioning, an unsteady life of AMN. Today, I feel compelled to reread the situation. Did I miss some kernel of truth or nugget of advice? Could I have more accurately anticipated and predicted the arc of my experience? Mostly I recall the kindness of the neurologist who broke the news. How he found a quiet alcove with comfortable chairs in the almost-empty hospital on that bright summer morning for us to talk. How he leaned toward me and spoke softly. How he maintained eye contact and explained the situation steadily. I don’t recall any other sounds.
No hustle. No bustle. Just his strong baritone. Together, we had reached the end of a long process meant to rule out possibilities. The last diagnosis left standing. He asked a host of questions about future plans and strength of support systems. I doubt that I had answers. I was disoriented from hours in an MRI tube, but I remember nodding. This was about confirmation. It had the feel of finality. There would be plenty of time to process.
Seventeen years later, I want to try to articulate the cumulative effect of discomfort. I stagger and lumber through my days. I am drained by near constant worry about falling and loss of bodily control. This flawed, beautiful body of mine lacks internal coherence. The active brain sending the right signals. The compromised myelin sheath unable to receive. The electrical cord of my spine stripped of insulation and conductivity. Slowly, slowly, I lost the protective sheath, and that means the difference between walking and wheeling.
A mentor once told me that what I’ve got to give is what I’ve got. So here it is, my friends. Constant surprise at some of the little battles that still need to be fought. Stunning delight at my good luck in companions and community. Enduring passion for advocacy and authenticity. Unbending belief that life is both puzzling and poignant.
Please raise a belated glass of bubbly, and let’s toast our days of confirmation. Our moments of awareness. Our search for temporary answers. Our quest for better questions. Here’s to what we once were. Here’s to what we’ve become. Here’s to what we will be.
Your body has fought the good fight for a long time. Your mental strength has amplified, your conviction for advocacy has strengthened, your wit has grown sharper and my admiration for you has only deepened. I celebrate your unconventional anniversary with a toast. And don’t forget, 20 years ago tomorrow, you stood beside me and sent me off into the world of the domesticated. So let’s be sure to have a second toast. And in this case, a more conventional one.
Thanks Randy. A tearful toast to you…”Yes, we will find a way.” Maybe me, too.
“Unbending belief that life is both puzzling and poignant.”
My dear sir, you’ve nailed it. Here’s to you – Cheers!