Paranoid Android
While Mike was sick, this Radiohead song captured the episodic normalcy of a functional work and home life, woven into the complete dismembered madness of witnessing my beautiful man slowly become unraveled by a life-ending disease. Bulbar ALS pulled one thread at a time from the woven fabric that was my John Michael, until he passed the early morning of February 20th, 2025.
As ALS progressed, the mosaics of motor units were chipped away like melting glaciers, slowly exposing the skeletal foundation of troughs between his metacarpals, the prominence of his cheekbones and temples as millimeters of facial muscles atrophied to the fascia and bone below. The muscular glaciers receded while his resonant, deep voiced, huge hearted persona grew into a intracranial voice he was forced to keep to himself - shouting, “I AM HERE. THIS IS MY LIFE SLIPPING THROUGH MY HANDS GOD DAMN IT!” He watched me oscillate from high function, connection and detailed care for him, to fractured episodes when randomly, an invisible threshold was reached. One time, I was on the floor looking for something and something in me broke. I slammed my forehead into the floor, breaking and sobbing. He waited silently, because his phone was not in his hands to allow him to speak through text. Then I dragged my fractured remnant forward, piecing myself roughly together to deliver the next solution to his need, get the equipment he needed and pop off to work at the clinic or at the kitchen table. The polarity of function was vast, and tucked tidily within our home, between him and me. The outside world viewing function only.
He was funny and sweet to link the islands of sanity together, decidedly making the lift for me as light as possible. He lifted us through his humor, through his robot text voice that said, “Mother fucker” with totally random and also perfect timing. Finny and Davis did everything they could, and their presence was magic, soothing, medicinal perfection in a tragic tale. They existed as the first moment we saw them, as well as the current moment; each memory of our knowing them flashing within their current existence. We realized time with these precious grown children shifted in a blink from forever to finite to fleeting, grateful for miracle of time we had with them when Mike was alive. The kids absolutely brought him to life and he absorbed every drop of time with them.
Mike wove us together like a loving puppetmaster, blowing puffs of air into our exhausted sails as he struggled to breathe.
Alone, I desperately patched together a ragtag pair, Maria and Jeff, during those last two limping, eviscerated months. Friends visited and wanted to help, and the need was so incredibly detailed and vast in the face of the most horrible loss, I was incapable of writing a job description amidst it all and interview to match the right person to the technical, desperate need.
Our angel, my brother, came to our rescue in February. On February 19th, the finish line was in view, and it arrived as I slept that night.
I am surprised to realize that moment occurred 9 months ago today. Tonight I had wine, watched “The Big C” and listened to a story about a woman who knew she had stage 4 melanoma, lived her life and didn’t tell anyone it was ending. The perfect catalyst mind fuck for having lived a parallel tale of bulbar ALS.
29 months from final diagnosis; 37 months from first diagnosis to last breath while I slept next to him and woke to hear the rhythmic breathing of the vent only to discover his breathing had stopped in the night sometime. Mechanical ventilation had become the 24/7/365 rhythmic background theme of our lives. Rather than the sound of breathing, a vent is the sin wave rhythm of being inflated, followed by passive exhale. As the breathing rhythm of the vent continued, my mind could not understand how Mike’s life had ceased. His body was cold, but the vent continued, and I could not process what was going on. The obvious was unimaginable.
I missed his last moments, either asleep or struggling to solve his dilemma of needing to void, but unable to move him by myself. How I wish that I held him until he melted asleep or melted away. Instead, I tucked his covers, muttering situational processing out loud, noting how I could not physically get him up by myself and went to sleep, promising to clean him up in the morning. I was feral, raw and useless as I walked around to the other side of the bed from him, perhaps in his last moments. The smell of warm urine crept into the air as I fell asleep, which may have been the moment he died, or just before. Broken and exhausted, I had no tenderness, only collapse was available. I woke to find him gone. God damn it. We miss so much in the moments in which we cannot take one bit more.
I danced tonight for the first time in a long time. It was not celebratory; it was cathartic and expressive. Perhaps the first time since he died. When Mike was alive, even before he had ALS, I would stay up late dancing after he went to sleep. After ALS, I would rage dance. Wild dancing. Jumping, sobbing, screaming, dancing - just letting out the sparks and the lava and the tears. My god. I am sure he felt the pounding of my feet and heard my sobs as he laid in bed and watched netflix or music or me. He loved me by letting me offgas shards of broken glass of our beautiful life. Bulbar ALS shattering our future and our present in slow motion and absolutely without our permission.
Tonight I held his composted body soil in muslin bags, contained within the pillowcase that I have slept with for months. I held him as I slow danced with my arms wrapped fully around two gallon bags of what is left of him, my hands touching my opposite ribs, feeling the density, weight and unfamiliarity of his mass, whispering, “Shhh, I’m here.” I sobbed with loud anguished exhales; missing him and all he was to me, and who I was to him. He treasured me - regardless of all I was not and soaking in all who I was to the last drop. He is somehow wrapped in a anguished scream; an embrace of his soil, my heart’s absolute desperate drowning flail towards his absence in our lives; my demand for his voice and presence in the lives of our kids that I cannot possibly fill with my own ingredients or his memory. Mike’s absence is felt so deeply that it takes shape and is filled with flailing, panicked anguish anguish anguish and silence silence silence but also his memory and voice and loss. God damn it.
There are so many truly horrible and evil people - it was a total waste to take Mike Hampton. Whoever rolled the dice and made that choice - fuck you eternally. You made an enormous miscalculation resulting in a deduction from the net good of the world, and our family. How some could live and cause so much worldwide, catastrophic destruction, and Mike Hampton could die and leave so much unmet need, is proof that there is no god, justice or logic. The roll of the dice took away our beloved Michael, and the connections we had as a couple are melting away.